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1. Summary of Research: Ten-Year Safety and Clinical Benefit from Open-Label Etanercept Treatment in Children and Young Adults with Juvenile Idiopathic Arthritis

Author: Vojinović, Jelena, Foeldvari, Ivan, Dehoorne, Joke, Panaviene, Violeta, Susic, Gordana, Horneff, Gerd, Stanevica, Valda, Kobusinska, Katarzyna, Zuber, Zbigniew, Dobrzyniecka, Bogna, Avcin, Tadej, Borlenghi, Cecilia, Arthur, Edmund, Zang, Chuanbo, Tsekouras, Vassilis, Vlahos, Bonnie, Martini, Alberto, and Ruperto, Nicolino
Published: 2024
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2. Development and Initial Validation of the Macrophage Activation Syndrome/Primary Hemophagocytic Lymphohistiocytosis Score, a Diagnostic Tool that Differentiates Primary Hemophagocytic Lymphohistiocytosis from Macrophage Activation Syndrome

Author: Abinun, Mario, Aggarwal, Amita, Akikusa, Jonathan, Al-Mayouf, Sulaiman, Alessio, Maria, Anton, Jordi, Apaz, Maria Teresa, Astigarraga, Itziar, Avcin, Tadej, Ayaz, Nuray Aktay, Barone, Patrizia, Bica, Bianca, Bolt, Isabel, Bovis, Francesca, Breda, Luciana, Chasnyk, Vyacheslav, Cimaz, Rolando, Corona, Fabrizia, Cron, Randy Q., Cuttica, Ruben, Davì, Sergio, Davidsone, Zane, De Cunto, Carmen, De Inocencio, Jaime, Demirkaya, Erkan, Eisenstein, Eli M., Enciso, Sandra, Espada, Graciela, Fischbach, Michel, Frosch, Michael, Gallizzi, Romina, Gamir, Maria Luz, Gao, Yi-Jin, Griffin, Thomas, Grom, Alexei, Hashad, Soad, Hennon, Teresa, Henter, Jan-Inge, Horne, AnnaCarin, Horneff, Gerd, Huasong, Zeng, Huber, Adam, Ilowite, Norman, Insalaco, Antonella, Ioseliani, Maka, Jeng, Michael, Kapović, Agneza Marija, Kasapcopur, Ozgur, Khubchandani, Raju, Kitoh, Toshiyuki, Koné-Paut, Isabelle, de Oliveira, Sheila Knupp Feitosa, Lattanzi, Bianca, Lehmberg, Kai, Lepore, Loredana, Li, Caifeng, Lipton, Jeffrey M., Magni-Manzoni, Silvia, Maritsi, Despoina, Martini, Alberto, McCurdy, Deborah, Merino, Rosa, Micalizzi, Concetta, Miettunen, Paivi, Minoia, Francesca, Mulaosmanovic, Velma, Nichols, Kim E., Nielsen, Susan, Ozen, Seza, Pal, Priyankar, Prahalad, Sampath, Ravelli, Angelo, Rigante, Donato, Rumba-Rozenfelde, Ingrida, Ruperto, Nicolino, Russo, Ricardo, Magalhães, Claudia Saad, Sanner, Helga, Sewairi, Wafaa Mohamed Saad, Shenoi, Susan, Artur Silva, Clovis, Stanevicha, Valda, Sterba, Gary, Stine, Kimo C., Susic, Gordana, Sztajnbok, Flavio, Takei, Syuji, Trauzeddel, Ralf, Tsitsami, Elena, Unsal, Erbil, Uziel, Yosef, Vougiouka, Olga, Wallace, Carol A., Weaver, Lehn, E. Weiss, Jennifer, Weitzman, Sheila, Wouters, Carine, Wulffraat, Nico, Zletni, Mabruka, Arico, Maurizio, Egeler, R. Maarten, Filipovich, Alexandra H., Gadner, Helmut, Imashuku, Shinsaku, Janka, Gritta, Ladisch, Stephan, McClain, Ken L., and Webb, David
Published: 2017
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3. Ten-year safety and clinical benefit from open-label etanercept treatment in children and young adults with juvenile idiopathic arthritis.

Author: Vojinović, Jelena, Foeldvari, Ivan, Dehoorne, Joke, Panaviene, Violeta, Susic, Gordana, Horneff, Gerd, Stanevicha, Valda, Kobusinska, Katarzyna, Zuber, Zbigniew, Dobrzyniecka, Bogna, Akikusa, Jonathan, Avcin, Tadej, Borlenghi, Cecilia, Arthur, Edmund, Tatulych, Svitlana Y, Zang, Chuanbo, Tsekouras, Vassilis, Vlahos, Bonnie, Martini, Alberto, and Ruperto, Nicolino
Subjects: DRUG efficacy, HODGKIN'S disease, CLINICAL trials, ANTI-inflammatory agents, JUVENILE idiopathic arthritis, ANTIRHEUMATIC agents, INFECTION, DESCRIPTIVE statistics, RESEARCH funding, DRUG side effects, PATIENT safety, DISEASE remission, EVALUATION, CHILDREN, ADOLESCENCE
Abstract: Objectives CLIPPER2 was an 8-year, open-label extension of the phase 3b, 2-year CLIPPER study on the safety and efficacy of etanercept in patients with JIA, categorized as extended oligoarticular arthritis (eoJIA), enthesitis-related arthritis (ERA) or PsA. Methods Participants with eoJIA (2–17 years old), ERA or PsA (each 12–17 years old) who received ≥1 etanercept dose (0.8 mg/kg weekly; maximum 50 mg) in CLIPPER could enter CLIPPER2. Primary end point was occurrence of malignancy. Efficacy assessments included proportions achieving JIA ACR 30/50/70/90/100 criteria and ACR inactive disease criteria, and clinical remission (ACR criteria) or Juvenile Arthritis DAS (JADAS) ≤1. Results Overall, 109/127 (86%) CLIPPER participants entered CLIPPER2 [ n = 55 eoJIA, n = 31 ERA, n = 23 PsA; 99 (78%) on active treatment]; 84 (66%) completed 120 months' follow-up [32 (25%) on active treatment]. One malignancy (Hodgkin's disease in 18-year-old patient with eoJIA treated with methotrexate for 8 years) was reported; there were no cases of active tuberculosis or deaths. Numbers and incidence rates (events per 100 patient-years) of TEAEs (excluding infections/ISRs) decreased from 193 (173.81) in Year 1 to 9 (27.15) in Year 10; TE infections and serious infections also decreased. Over 45% of participants (n = 127) achieved JIA ACR50 responses from Month 2 onwards; 42 (33%) and 34 (27%) participants achieved JADAS and ACR clinical remission, respectively. Conclusions Etanercept treatment up to 10 years was well tolerated, consistent with the known safety profile, with durable response in the participants still on active treatment. The benefit–risk assessment of etanercept in these JIA categories remains favourable. Trial registration ClinicalTrials.gov IDs: CLIPPER (NCT00962741); CLIPPER2 (NCT01421069) [ABSTRACT FROM AUTHOR]
Published: 2024
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4. The Serbian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)

Author: Susic, Gordana, Vojinovic, Jelena, Vijatov-Djuric, Gordana, Stevanovic, Dejan, Lazarevic, Dragana, Djurovic, Nada, Novakovic, Dusica, Consolaro, Alessandro, Bovis, Francesca, Ruperto, Nicolino, and For the Paediatric Rheumatology International Trials Organisation (PRINTO)
Published: 2018
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5. Efficacy of pastes containing CPP-ACP and CPP-ACFP in patients with Sjögren’s syndrome

Author: Peric, Tamara, Markovic, Dejan, Petrovic, Bojan, Radojevic, Vesna, Todorovic, Tatjana, Radicevic, Biljana Andjelski, Heinemann, Radmila Jancic, Susic, Gordana, Popadic, Aleksandra Peric, and Spiric, Vesna Tomic
Published: 2015
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6. Health-related quality of life and emotional problems in juvenile idiopathic arthritis

Author: Stevanovic, Dejan and Susic, Gordana
Published: 2013

7. American College of Rheumatology Provisional Criteria for Clinically Relevant Improvement in Children and Adolescents With Childhood-Onset Systemic Lupus Erythematosus

Author: Brunner, Hermine I, Holland, Michael J, Beresford, Michael W, Ardoin, Stacy P, Appenzeller, Simone, Silva, Clovis A, Flores, Francisco, Goilav, Beatrice, Aydin, Pinar Ozge Avar, Wenderfer, Scott E, Levy, Deborah M, Ravelli, Angelo, Khubchandani, Raju, Avcin, Tadej, Klein-Gitelman, Marisa S, Ruperto, Nicolino, Feldman, Brian M, Ying, Jun, Battagliotti, Cristina, Brusco, Maria Isabel, Cuttica, Ruben, De Cunto, Carmen, Espada, Graciela, Farfan, Maximiliano, Garay, Stella, Marcantoni, Maria, Marcela, Alvarez, Meiorin, Silvia, Rama, Maria Elena, Russo, Ricardo, Walsh, Carolina Torre, Zamparo, Celso, Adib, Navid, Akikusa, Jonathan, Boros, Christina, Lee, Senq J, Mckay, Damien, Piper, Susan, Joos, Rik, Bica, Blanca, Campos, Leonardo, Cavalcanti, Andre, do Prado, Rogerio, Donner-Maliki, Amanda, Fernandes, Taciana, Fonseca, Adriana, de Almeida, Rozana Gasparello, Guariento, Andressa, Gusman, Catherine, Fiorot, Fernanda Jusan, Oliveira, Sheila Knupp, Len, Claudio, Campos, Lucia M Arruda, Machado, Sandra, Marques, Luciana, de Carvalho, Luciana Martins, Moulin, Rodrigo, Pedroso, Soraya, Pileggi, Gecilmara, Romanelli, Paulo Roberto S, Saad-Magalhaes, Claudia, Sakamoto, Ana, Santos, Maria Carolina, Silva, Marco Felipe, Spelling, Paulo, Sztajnbok, Flavio, Terreri, Maria, Cabral, David, Chedeville, Gaelle, Ellsworth, Janet, Huber, Adam, Tucker, Lori, Houghton, Kristin, Borzutzky, Arturo, Ladino, Mabel, Norambuena, Ximena, Eraso, Ruth, Mosquera, Angela, Velasquez, Monica, Harjacek, Miroslav, Jelusic, Marija, Hermosilla, Cecilia Coto, Dolezalova, Pavla, Nielsen, Susan, Tineo, Carmen, Alegria, Mauricio, Dressler, Frank, Foell, Dirk, Ganser, Gerd, Hinze, Claas, Hufnagel, Markus, Lutz, Thomas, Trauzeddel, Ralf, Boiu, Sorina, Trachana, Maria, Tsitsami, Elena, Cifuentes, Mayra, Orban, Ilonka, Aggarwal, Amita, Sawhney, Sujata, Aviel, Yonatan Butbul, Cimaz, Rolando, Maggio, Maria Cristina, Rumba-Rozenfelde, Ingrid, Hashad, Soad, Lim, Sern Chin, Abud, Carlos, Burgos-Vargas, Ruben, Carreno-Manjarrez, Roberto, Enciso Pelaez, Sandra, Hernandez-Huirache, Hayde, Maldonado Velazquez, Rocio, Orozco, Javier, Rodriguez-Lozano, Ana Luisa, Rojas Pacheco, Omar Ernesto, Suarez Larios, Luz Maria, Vega, Gabriel, Ramirez Miramontes, Julia Veronica, Ruiz Lopez, Ivon Karina, Kamphuis, Sylvia, Schonenberg-Meinema, Dieneke, Concannon, Anthony, Yan, Jaqueline, Jaime, Martha Jarquin, Al Abrawi, Safiya, Vega, Cynthia, Lopez-Benitez, Jorge, Estrella, Amparo Ibanez, Miraval, Tatiana, Dans, Leonia, Kimseng, Karen Joy, Opoka-Winiarska, Violetta, Rutkowska-Sak, Lidia, Smolewska, Elzbieta, Conde, Marta, Guedes, Margarida, del Valle, Enid, Quintero-Del Rio, Ana, Ailioaie, Constantin, Sparchez, Mihaela, Alekseeva, Ekaterina, Keltsev, Vladimir, Al-Mayouf, Sulaiman, Asiri, Abdurhman, Suwairi, Wafaa, Susic, Gordana, Vijatov-Djuric, Gordana, Ang, Elizabeth, Arkachaisri, Thaschawee, Boteanu, Alina-Lucica, Lopez-Robledillo, Juan Carlos, San Ildefonso, Marta Medrano, Modesto, Consuelo, Calvo, Inmaculada, Sotoca-Fernandez, Jorge, Bolt, Isabel, Vilaiyuk, Soamarat, Al-Abadi, Eslam, Baildam, Eileen, Fotis, Lampros, Pain, Clare, Pilkington, Clarissa, Abulaban, Khalid, Barbar-Smiley, Fatima, Binstadt, Bryce, Bohnsack, John, Boneparth, Alexis, Brown, Diane, Chira, Peter, Cron, Randy, Dedeoglu, Fatma, Eberhard, Anne, Gedalia, Abraham, Grom, Alexei, Henrickson, Michael, Hom, Christine, Huggins, Jennifer, Jerath, Rita, Jones, Jordan, Jung, Lawrence, Kingsbury, Daniel, Lai, Jamie, Lovell, Daniel, Nanda, Kabita, Nocton, James, Olson, Judyann, O'Neil, Kathleen, Onel, Karen, Punaro, Lynn, Reiff, Andreas, Rouster-Stevens, Kelly, Ruth, Natasha, Schikler, Ken, Schmidt, Kara Murphy, Schulert, Grant, Shaham, Bracha, Singer, Nora, Smith, Judith, Sundel, Robert, Syverson, Grant, Vega-Fernandez, Patricia, Vehe, Richard, Wagner-Weiner, Linda, Cameto, Juan, Jurado, Rosario, Maldonado, Irama, Org, Paediat Rheumatology Int Trial, Collaborative, Pediat Rheumatology, AII - Inflammatory diseases, Graduate School, Paediatric Infectious Diseases / Rheumatology / Immunology, Brunner, Hermine I., Holland, Michael J., Beresford, Michael W., Ardoin, Stacy P., Appenzeller, Simone, Silva, Clovis A., Flores, Francisco, Goilav, Beatrice, Avar Aydin, Pinar Ozge, Wenderfer, Scott E., Levy, Deborah M., Ravelli, Angelo, Khubchandani, Raju, Avcin, Tadej, Klein-Gitelman, Marisa S., Ruperto, Nicolino, Feldman, Brian M., Ying, Jun, Battagliotti, Cristina, Brusco, Maria Isabel, Cuttica, Rubén, De Cunto, Carmen, Espada, Graciela, Farfan, Maximiliano, Garay, Stella, Marcantoni, Maria, Marcela, Alvarez, Meiorin, Silvia, Rama, Maria Elena, Russo, Ricardo, Torre Walsh, Carolina, Zamparo, Celso, Adib, Navid, Akikusa, Jonathan, Boros, Christina, Lee, Senq J., Mckay, Damien, Piper, Susan, Joos, Rik, Bica, Blanca, Campos, Leonardo, Cavalcanti, André, do Prado, Rogerio, Donner-Maliki, Amanda, Fernandes, Taciana, Fonseca, Adriana, Gasparello de Almeida, Rozana, Guariento, Andressa, Gusman, Catherine, Jusan Fiorot, Fernanda, Knupp Oliveira, Sheila, Len, Claudio, Arruda Campos, Lucia M., Machado, Sandra, Marques, Luciana, Martins de Carvalho, Luciana, Moulin, Rodrigo, Pedroso, Soraya, Pileggi, Gecilmara, Romanelli, Paulo Roberto S., Saad-Magalhaes, Claudia, Sakamoto, Ana, Santos, Maria Carolina, Silva, Marco Felipe, Spelling, Paulo, Sztajnbok, Slavio, Terreri, Maria, Cabral, David, Chédeville, Gaëlle, Ellsworth, Janet, Huber, Adam, Tucker, Lori, Houghton, Kristin, Borzutzky, Arturo, Ladino, Mabel, Norambuena, Ximena, Eraso, Ruth, Mosquera, Angela, Velasquez, Monica, Harjacek, Miroslav, Jelusic, Marija, Coto Hermosilla, Cecilia, Dolezalova, Pavla, Nielsen, Susan, Tineo, Carmen, Alegria, Mauricio, Dressler, Frank, Foell, Dirk, Ganser, Gerd, Hinze, Claa, Hufnagel, Marku, Lutz, Thoma, Trauzeddel, Ralf, Boiu, Sorina, Trachana, Maria, Tsitsami, Elena, Cifuentes, Mayra, Orbán, Ilonka, Aggarwal, Amita, Sawhney, Sujata, Butbul Aviel, Yonatan, Cimaz, Rolando, Maggio, Maria Cristina, Rumba-Rozenfelde, Ingrid, Hashad, Soad, Lim, Sern Chin, Abud, Carlo, Burgos-Vargas, Ruben, Carreño-Manjarrez, Roberto, Enciso Pelaez, Sandra, Hernandez-Huirache, Hayde, Maldonado Velázquez, Rocio, Orozco, Javier, Rodriguez-Lozano, Ana Luisa, Rojas Pacheco, Omar Ernesto, Suárez Larios, Luz Maria, Vega, Gabriel, Ramírez Miramontes, Julia Verónica, Ruíz Lopez, Ivon Karina, Kamphuis, Sylvia, Schonenberg-Meinema, Dieneke, Concannon, Anthony, Yan, Jaqueline, Jarquin Jaime, Martha, Al Abrawi, Safiya, Vega, Cynthia, Lopez-Benitez, Jorge, Ibáñez Estrella, Amparo, Miraval, Tatiana, Dans, Leonia, Kimseng, Karen Joy, Opoka-Winiarska, Violetta, Rutkowska-Sak, Lidia, Smolewska, Elzbieta, Conde, Marta, Guedes, Margarida, del Valle, Enid, Quintero-Del Rio, Ana, Ailioaie, Constantin, Sparchez, Mihaela, Alekseeva, Ekaterina, Keltsev, Vladimir, Al-Mayouf, Sulaiman, Asiri, Abdurhman, Suwairi, Wafaa, Susic, Gordana, Vijatov-Djuric, Gordana, Ang, Elizabeth, Arkachaisri, Thaschawee, Boteanu, Alina-Lucica, Lopez-Robledillo, Juan Carlo, Medrano San Ildefonso, Marta, Modesto, Consuelo, Calvo, Inmaculada, Sotoca-Fernandez, Jorge, Bolt, Isabel, Vilaiyuk, Soamarat, Al-Abadi, Eslam, Baildam, Eileen, Fotis, Lampro, Pain, Clare, Pilkington, Clarissa, Abulaban, Khalid, Barbar-Smiley, Fatima, Binstadt, Bryce, Bohnsack, John, Boneparth, Alexi, Brown, Diane, Chira, Peter, Cron, Randy, Dedeoglu, Fatma, Eberhard, Anne, Gedalia, Abraham, Grom, Alexei, Henrickson, Michael, Hom, Christine, Huggins, Jennifer, Jerath, Rita, Jones, Jordan, Jung, Lawrence, Kingsbury, Daniel, Lai, Jamie, Lovell, Daniel, Nanda, Kabita, Nocton, Jame, Olson, Judyann, O’Neil, Kathleen, Onel, Karen, Punaro, Lynn, Reiff, Andrea, Rouster-Stevens, Kelly, Ruth, Natasha, Schikler, Ken, Murphy Schmidt, Kara, Schulert, Grant, Shaham, Bracha, Singer, Nora, Smith, Judith, Sundel, Robert, Syverson, Grant, Vega-Fernandez, Patricia, Vehe, Richard, Wagner-Weiner, Linda, Cameto, Juan, Jurado, Rosario, Maldonado, Irama, and Pediatrics
Subjects: medicine.medical_specialty, Outcome Assessment, Health Care/methods, Adolescent, Delphi Technique, Antirheumatic Agents/therapeutic use, Severity of Illness Index, Child health, Article, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Internal medicine, Severity of illness, Outcome Assessment, Health Care, medicine, Pediatric nephrology, Humans, Lupus Erythematosus, Systemic, skin and connective tissue diseases, Child, 030203 arthritis & rheumatology, Systemic lupus erythematosus, Lupus erythematosus, Lupus Erythematosus, Receiver operating characteristic, business.industry, Consensus conference, childhood-onset systemic lupus erythematosus, Outcome Assessment, Health Care/methods, medicine.disease, Rheumatology,Systemic lupus erythematosus,autoimmune inflammatory disease, Antirheumatic Agents, Lupus Erythematosus, Systemic/drug therapy, Systemic/drug therapy, business, Algorithms
Abstract: OBJECTIVE: To develop a Childhood Lupus Improvement Index (CHILI) as a tool to measure response to therapy in childhood-onset systemic lupus erythematosus (cSLE), with a focus on clinically relevant improvement (CRIc SLE ). METHODS: Pediatric nephrology and rheumatology subspecialists (n = 213) experienced in cSLE management were invited to define CRIc SLE and rate a total of 433 unique patient profiles for the presence/absence of CRIc SLE . Patient profiles included the following cSLE core response variables (CRVs): global assessment of patient well-being (patient-global), physician assessment of cSLE activity (MD-global), disease activity index score (here, we used the Systemic Lupus Erythematosus Disease Activity Index), urine protein-to-creatinine ratio, and Child Health Questionnaire physical summary score. Percentage and absolute changes in these cSLE- CRVs (baseline versus follow-up) were considered in order to develop candidate algorithms and validate their performance (sensitivity, specificity, area under the receiver operating characteristic curve [AUC] ; range 0-1). RESULTS: During an international consensus conference, unanimous agreement on a definition of CRIc SLE was achieved ; cSLE experts (n = 13) concurred (100%) that the preferred CHILI algorithm considers absolute changes in the cSLE- CRVs. After transformation to a range of 0-100, a CHILI score of ≥54 had outstanding accuracy for identifying CRIc SLE (AUC 0.93, sensitivity 81.1%, and specificity 84.2%). CHILI scores also reflect minor, moderate, and major improvement for values exceeding 15, 68, and 92, respectively (all AUC ≥0.92, sensitivity ≥93.1%, and specificity ≥73.4%). CONCLUSION: The CHILI is a new, seemingly highly accurate index for measuring CRI in cSLE over time. This index is useful to categorize the degree of response to therapy in children and adolescents with cSLE.
Published: 2019

8. Validity and Reliability of Four Parent/Patient–Reported Outcome Measures for Juvenile Idiopathic Arthritis Remote Monitoring

Author: van Dijkhuizen, E. H. Pieter, Ridella, Francesca, Naddei, Roberta, Trincianti, Chiara, Avrusin, Ilia, Mazzoni, Marta, Sutera, Diana, Ayaz, Nuray Aktay, Penades, Inmaculada Calvo, Constantin, Tamas, Herlin, Troels, Oliveira, Sheila K., Rygg, Marite, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Varbanova, Boriana, Ruperto, Nicolino, Ravelli, Angelo, and Consolaro, Alessandro
Subjects: Parents, Disability Evaluation, Psychometrics, Rheumatology, Health Status, Surveys and Questionnaires, Arthritis, Juvenile/diagnosis, Quality of Life, Humans, Reproducibility of Results, Patient Reported Outcome Measures
Abstract: Objective: The aim of this work was to provide evidence of validity and reliability for 4 parent/child–reported outcome measures included in the Outcome Measures in Rheumatology juvenile idiopathic arthritis core domain set: the evaluation of the child's pain and level of disease activity, the assessment of morning stiffness duration, and an active joint count for proxy/self-assessment. Methods: Patients were included in the multinational study Epidemiology Treatment and Outcome of Childhood Arthritis. Criterion validity was assessed by examining the correlation of the 4 tested measures with physician measures and the clinical Juvenile Arthritis Disease Activity Score in 10 joints (cJADAS10) in the whole sample and after grouping patients by International League of Associations for Rheumatology (ILAR) category, geographic area, and education level. Reliability was assessed comparing 2 visits 7–14 days apart with intraclass correlation coefficients (ICCs). Results: A total of 8,643 parents and 6,060 patients had all the evaluations available. Correlations of tested measures were moderate (0.4–0.7) with physician-reported measures. The level of correlation with the cJADAS10 remained stable after grouping patients by ILAR category, geographic areas, and level of education of the parent filling the questionnaire. In 442 parents and 344 children, ICCs ranged between 0.79 and 0.87 for parents and 0.81 and 0.88 for children. Conclusion: The 4 tested parent/child–reported outcomes showed good criterion validity and excellent reliability. These tools can be considered for remote patient assessment, when in-person evaluation might not be possible.
Published: 2022

9. 2016 Classification Criteria for Macrophage Activation Syndrome Complicating Systemic Juvenile Idiopathic Arthritis: A European League Against Rheumatism/American College of Rheumatology/Paediatric Rheumatology International Trials Organisation Collaborative Initiative

Author: Ravelli, Angelo, Minoia, Francesca, Davì, Sergio, Horne, AnnaCarin, Bovis, Francesca, Pistorio, Angela, Aricò, Maurizio, Avcin, Tadej, Behrens, Edward M., De Benedetti, Fabrizio, Filipovic, Lisa, Grom, Alexei A., Henter, Jan-Inge, Ilowite, Norman T., Jordan, Michael B., Khubchandani, Raju, Kitoh, Toshiyuki, Lehmberg, Kai, Lovell, Daniel J., Miettunen, Paivi, Nichols, Kim E., Ozen, Seza, Schmid, Jana Pachlopnik, Ramanan, Athimalaipet V., Russo, Ricardo, Schneider, Rayfel, Sterba, Gary, Uziel, Yosef, Wallace, Carol, Wouters, Carine, Wulffraat, Nico, Demirkaya, Erkan, Brunner, Hermine I., Martini, Alberto, Ruperto, Nicolino, Cron, Randy Q., Abinun, Mario, Aggarwal, Amita, Akikusa, Jonathan, Al-Mayouf, Sulaiman M., Alessio, Maria, Anton, Jordi, Apaz, Maria Teresa, Astigarraga, Itziar, Ayaz, Nuray A., Barone, Patrizia, Bica, Blanca, Bolt, Isabel, Breda, Luciana, Chasnyk, Vyacheslav, Cimaz, Rolando, Corona, Fabrizia, Cuttica, Ruben, DʼAngelo, Gianfranco, Davidsone, Zane, De Cunto, Carmen, De Inocencio, Jaime, Eisenstein, Eli, Enciso, Sandra, Espada, Graciela, Fischbach, Michel, Frosch, Michael, Gallizzi, Romina, Gamir, Maria Luz, Gao, Yi-Jin, Griffin, Thomas, Hashad, Soad, Hennon, Teresa, Horneff, Gerd, Huasong, Zeng, Huber, Adam, Ilowite, Norman, Insalaco, Antonella, Ioseliani, Maka, Jelusic-Drazic, Marijia, Jeng, Michael, Kapovic, Agneza, Kasapcopur, Ozgur, Kone-Paut, Isabelle, de Oliveira, Sheila Knupp Feitosa, Lattanzi, Bianca, Lepore, Loredana, Li, Caifeng, Lipton, Jeffrey M., Magni-Manzoni, Silvia, Maritsi, Despoina, McCurdy, Deborah, Merino, Rosa, Mulaosmanovic, Velma, Nielsen, Susan, Pal, Priyankar, Prahalad, Sampath, Rigante, Donato, Rumba-Rozenfelde, Ingrida, Magalhaes, Claudia Saad, Sanner, Helga, Sawhney, Sujata, Sewairi, Wafaa M., Shakoory, Bita, Shenoi, Susan, Clovis, Artur Silva, Stanevicha, Valda, Stine, Kimo C., Susic, Gordana, Sztajnbok, Flavio, Takei, Syuji, Tezer, Hasan, Trauzeddel, Ralf, Tsitsami, Elena, Unsal, Erbil, Vougiouka, Olga, Weaver, Lehn K., Weiss, Jennifer, Weitzman, Sheila, and Zletni, Mabruka
Published: 2016
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10. Validity and Reliability of Four Parent/Patient–Reported Outcome Measures for Juvenile Idiopathic Arthritis Remote Monitoring.

Author: van Dijkhuizen, E. H. Pieter, Ridella, Francesca, Naddei, Roberta, Trincianti, Chiara, Avrusin, Ilia, Mazzoni, Marta, Sutera, Diana, Ayaz, Nuray Aktay, Penades, Inmaculada Calvo, Constantin, Tamas, Herlin, Troels, Oliveira, Sheila K., Rygg, Marite, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Varbanova, Boriana, Ruperto, Nicolino, Ravelli, Angelo, and Consolaro, Alessandro
Subjects: JUVENILE idiopathic arthritis, INTRACLASS correlation, JUVENILE diseases, MEDICAL needs assessment
Abstract: Objective: The aim of this work was to provide evidence of validity and reliability for 4 parent/child–reported outcome measures included in the Outcome Measures in Rheumatology juvenile idiopathic arthritis core domain set: the evaluation of the child's pain and level of disease activity, the assessment of morning stiffness duration, and an active joint count for proxy/self‐assessment. Methods: Patients were included in the multinational study Epidemiology Treatment and Outcome of Childhood Arthritis. Criterion validity was assessed by examining the correlation of the 4 tested measures with physician measures and the clinical Juvenile Arthritis Disease Activity Score in 10 joints (cJADAS10) in the whole sample and after grouping patients by International League of Associations for Rheumatology (ILAR) category, geographic area, and education level. Reliability was assessed comparing 2 visits 7–14 days apart with intraclass correlation coefficients (ICCs). Results: A total of 8,643 parents and 6,060 patients had all the evaluations available. Correlations of tested measures were moderate (0.4–0.7) with physician‐reported measures. The level of correlation with the cJADAS10 remained stable after grouping patients by ILAR category, geographic areas, and level of education of the parent filling the questionnaire. In 442 parents and 344 children, ICCs ranged between 0.79 and 0.87 for parents and 0.81 and 0.88 for children. Conclusion: The 4 tested parent/child–reported outcomes showed good criterion validity and excellent reliability. These tools can be considered for remote patient assessment, when in‐person evaluation might not be possible. [ABSTRACT FROM AUTHOR]
Published: 2023
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11. Development and Initial Validation of the Macrophage Activation Syndrome/Primary Hemophagocytic Lymphohistiocytosis Score, a Diagnostic Tool that Differentiates Primary Hemophagocytic Lymphohistiocytosis from Macrophage Activation Syndrome

Author: Minoia, Francesca, Bovis, Francesca, Davì, Sergio, Insalaco, Antonella, Lehmberg, Kai, Shenoi, Susan, Weitzman, Sheila, Espada, Graciela, Gao, Yi-Jin, Anton, Jordi, Kitoh, Toshiyuki, Kasapcopur, Ozgur, Sanner, Helga, Merino, Rosa, Astigarraga, Itziar, Alessio, Maria, Jeng, Michael, Chasnyk, Vyacheslav, Nichols, Kim E., Huasong, Zeng, Li, Caifeng, Micalizzi, Concetta, Ruperto, Nicolino, Martini, Alberto, Cron, Randy Q., Ravelli, Angelo, Horne, AnnaCarin, Abinun, Mario, Aggarwal, Amita, Akikusa, Jonathan, Al-Mayouf, Sulaiman, Apaz, Maria Teresa, Avcin, Tadej, Ayaz, Nuray Aktay, Barone, Patrizia, Bica, Bianca, Bolt, Isabel, Breda, Luciana, Cimaz, Rolando, Corona, Fabrizia, Cuttica, Ruben, Davidsone, Zane, De Cunto, Carmen, De Inocencio, Jaime, Demirkaya, Erkan, Eisenstein, Eli M., Enciso, Sandra, Fischbach, Michel, Frosch, Michael, Gallizzi, Romina, Gamir, Maria Luz, Griffin, Thomas, Grom, Alexei, Hashad, Soad, Hennon, Teresa, Henter, Jan-Inge, Horne, AnnaCarin, Horneff, Gerd, Huber, Adam, Ilowite, Norman, Ioseliani, Maka, Kapović, Agneza Marija, Khubchandani, Raju, Koné-Paut, Isabelle, de Oliveira, Sheila Knupp Feitosa, Lattanzi, Bianca, Lepore, Loredana, Lipton, Jeffrey M., Magni-Manzoni, Silvia, Maritsi, Despoina, McCurdy, Deborah, Miettunen, Paivi, Mulaosmanovic, Velma, Nielsen, Susan, Ozen, Seza, Pal, Priyankar, Prahalad, Sampath, Rigante, Donato, Rumba-Rozenfelde, Ingrida, Ruperto, Nicolino, Russo, Ricardo, Magalhães, Claudia Saad, Sewairi, Wafaa Mohamed Saad, Silva, Clovis Artur, Stanevicha, Valda, Sterba, Gary, Stine, Kimo C., Susic, Gordana, Sztajnbok, Flavio, Takei, Syuji, Trauzeddel, Ralf, Tsitsami, Elena, Unsal, Erbil, Uziel, Yosef, Vougiouka, Olga, Wallace, Carol A., Weaver, Lehn, Weiss, Jennifer E., Wouters, Carine, Wulffraat, Nico, Zletni, Mabruka, Arico, Maurizio, Egeler, Maarten R., Filipovich, Alexandra H., Gadner, Helmut, Imashuku, Shinsaku, Janka, Gritta, Ladisch, Stephan, McClain, Ken L., and Webb, David
Published: 2017
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12. Increased incidence of inflammatory bowel disease on etanercept in juvenile idiopathic arthritis regardless of concomitant methotrexate use

Author: van Straalen, Joeri W, primary, Krol, Roline M, additional, Giancane, Gabriella, additional, Panaviene, Violeta, additional, Ailioaie, Laura Marinela, additional, Doležalová, Pavla, additional, Cattalini, Marco, additional, Susic, Gordana, additional, Sztajnbok, Flavio R, additional, Maritsi, Despoina, additional, Constantin, Tamas, additional, Sawhney, Sujata, additional, Rygg, Marite, additional, Oliveira, Sheila Knupp, additional, Nordal, Ellen Berit, additional, Saad-Magalhães, Claudia, additional, Rubio-Perez, Nadina, additional, Jelusic, Marija, additional, de Roock, Sytze, additional, Wulffraat, Nico M, additional, Ruperto, Nicolino, additional, and Swart, Joost F, additional
Published: 2021
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13. International Consensus for the Dosing of Corticosteroids in Childhood-Onset Systemic Lupus Erythematosus With Proliferative Lupus Nephritis

Author: Chalhoub, Nathalie E., Wenderfer, Scott E., Levy, Deborah M., Rouster-Stevens, Kelly, Aggarwal, Amita, Savani, Sonia I., Ruth, Natasha M., Arkachaisri, Thaschawee, Qiu, Tingting, Merritt, Angela, Onel, Karen, Goilav, Beatrice, Khubchandani, Raju P., Deng, Jianghong, Fonseca, Adriana R., Ardoin, Stacy P., Ciurtin, Coziana, Kasapcopur, Ozgur, Jelusic, Marija, Huber, Adam M., Ozen, Seza, Klein-Gitelman, Marisa S., Appenzeller, Simone, Cavalcanti, André, Fotis, Lampros, Lim, Sern Chin, Silva, Rodrigo M., Miramontes, Julia Ramírez, Rosenwasser, Natalie L., Saad-Magalhaes, Claudia [UNESP], Schonenberg-Meinema, Dieneke, Scott, Christiaan, Silva, Clovis A., Enciso, Sandra, Terreri, Maria T., Torres-Jimenez, Alfonso-Ragnar, Trachana, Maria, Al-Mayouf, Sulaiman M., Devarajan, Prasad, Huang, Bin, Brunner, Hermine I., Abulaban, Khalid, Aguiar, Cassyanne, Ahn, Sun-Young, Akoghlanian, Shoghik, Al-Abrawi, Safiya, Aljaberi, Najla, Alperin, Risa, Angeles-Han, Sheila, Ardalan, Kaveh, Bader-Meunier, Brigitte, Balboni, Imelda, Barbar-Smiley, Fatima, Baxter, Sarah, Beary, John, Boneparth, Alexis, Brakeman, Paul, Bridges, John, Burgos-Vargas, Ruben, Cabral, David A., Cameto, Juan, Carter, Caitlin, Chang, Joyce, Chédeville, Gaëlle, Chhakchhuak, Christine, Chiraseveenuprapund, Peter, Cifuentes Alvarado, Mayra, Concannon, Anthony, Cooper, Jennifer, Cron, Randy, De Carvalho, Luciana Martins, De Quattro, Kimberly, De Ranieri, Deirdre, Dizon, Brian, Donnelly Wrigley, Catherine, Duong, Minh Dien, Eberhard, Anne, Ede, Kaleo, Edelheit, Barbara, Edens, Cuoghi, Espada, Graciela, Farhey, Yolanda, Flores, Francisco, Fritz, Deborah, Ganguli, Suhas, Gilbert, Mileka, Gittar, Patsy, Greenbaum, Larry, Grom, Alexei, Gulati, Gaurav, Harry, Onengiya, Hayward, Kristen, Henrickson, Michael, Hersh, Aimee, Hiraki, Linda, Hiskey, Megan, Hoffmann, Sarah, Hollander, Matthew, Hom, Christine, Houk, Lawrence, Houk, J. Brian, Hsieh, Elena W.Y., Hsu, Joyce, Jensen, Paul, Joos, Rik, Jurado, Rosario, Jusan Fiorot, Fernanda, Kallash, Mahmoud, Kamphuis, Sylvia, Keltsev, Vladimir, Khanna, Surabhi, Kim, Susan, Kimseng, Karen Joy, Knight, Andrea, Kunder, Rebecca, Lai, Jamie, Laskin, Benjamin, Lewandowski, Laura, Lim, Lily, Linda, Wagner-Weiner, Lo, Mindy, Lovell, Daniel, Luggen, Michael, Madison, Jacqueline, Mansuri, Asif, Martin, Lorena, Mason, Sherene, Miller, Michael, Mina, Rina, Mohammed, Abdul, Moncrieffe, Halima, Moorthy, Lakshmi, Morgan, Esi, Mosquera, Angela, Muntel, Emily, Muscal, Eyal, Myones, Barry, Nocton, James, Ogbu, Ekemini, Okamura, Daryl, Olson, Judyann, Orrock, Janet, Paim-Marques, Luciana, Pain, Clare, Park, Catherine, Patel, Pooja, Pereira, Maria, Prado, Rogerio do, Radhakrishna, Suhas, Rheault, Michelle, Ridgway, William, Riskalla, Mona, Ronis, Tova, Sadun, Rebecca, Sagcal-Gironella, Anna Carmela, Santos, Maria carolina, Schikler, Kenneth, AL Suwairi, Wafaa, Siddiqi, Nabeela, Silva, Marco Felipe, Singh-Grewal, Davinder, Smitherman, Emily, Smolewska, Elzbieta, Son, Mary Beth, Srinivasalu, Hemalatha, Sule, Sangeeta, Susic, Gordana, Syed, Reema, Thatayatikom, Akaluck, Ting, Tracy, Toth, Mary, Turnier, Jessica, Vashisht, Priyanka, Vega Fernandez, Patricia, Velasquez, Monica, von Scheven, Emily, Wahezi, Dawn, Ware, Avis, Wu, Eveline, Yan, Jacqueline, Yildirim-Toruner, Cagri, Zamparo, Celso, Zhang, Yujuan, Lawson, Erica, Graduate School, Paediatric Infectious Diseases / Rheumatology / Immunology, AII - Inflammatory diseases, University of Cincinnati College of Medicine, Baylor College of Medicine, The Hospital for Sick Children and The University of Toronto, Emory University and Children's Healthcare of Atlanta, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Medical University of South Carolina, KK Women's and Children's Hospital, Cincinnati Children's Hospital Medical Center, Hospital for Special Surgery, Albert Einstein College of Medicine, SRCC Children's Hospital, Capital Medical University and National Center for Children's Health, Universidade Federal do Rio de Janeiro (UFRJ), Nationwide Children's Hospital, University College London, Istanbul University-Cerrahpasa, University of Zagreb School of Medicine, IWK Health Centre and Dalhousie University, Hacettepe University, Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children's Hospital of Chicago, Universidade Estadual de Campinas (UNICAMP), Universidade Federal de Pernambuco (UFPE), National and Kapodistian University of Athens, University Teknologi MARA, Instituto Mexicano del Seguro Social, University of Washington and Seattle Children's Hospital, Universidade Estadual Paulista (UNESP), Amsterdam University Medical Center, Red Cross War Memorial Children's Hospital and University of Cape Town, Universidade de São Paulo (USP), Hospital de la Beneficencia Española, Universidade Federal de São Paulo (UNIFESP), National Medical Center La Raza, Aristotle University of Thessaloniki, King Faisal Specialist Hospital and Research Center and Alfaisal University, and University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center
Subjects: Male, medicine.medical_specialty, Adolescent, medicine.drug_class, Immunology, Lupus nephritis, Renal function, Article, Rheumatology, childhood-onset systemic lupus erythematosus, corticosteroids, lupus nephritis, treatment, Internal medicine, Biopsy, Immunology and Allergy, Medicine, Humans, Lupus Erythematosus, Systemic, Dosing, Age of Onset, Child, Glucocorticoids, Retrospective Studies, Kidney, Proteinuria, medicine.diagnostic_test, business.industry, food and beverages, medicine.disease, Lupus Nephritis, Clinical trial, medicine.anatomical_structure, Corticosteroid, Female, medicine.symptom, business
Abstract: Made available in DSpace on 2022-04-28T19:49:00Z (GMT). No. of bitstreams: 0 Previous issue date: 2022-02-01 Arthritis Foundation Institute of Clinical and Translational Sciences Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP) National Institute of Arthritis and Musculoskeletal and Skin Diseases National Institute of Diabetes and Digestive and Kidney Diseases National Center for Advancing Translational Sciences Objective: To develop a standardized steroid dosing regimen (SSR) for physicians treating childhood-onset systemic lupus erythematosus (SLE) complicated by lupus nephritis (LN), using consensus formation methodology. Methods: Parameters influencing corticosteroid (CS) dosing were identified (step 1). Data from children with proliferative LN were used to generate patient profiles (step 2). Physicians rated changes in renal and extrarenal childhood-onset SLE activity between 2 consecutive visits and proposed CS dosing (step 3). The SSR was developed using patient profile ratings (step 4), with refinements achieved in a physician focus group (step 5). A second type of patient profile describing the course of childhood-onset SLE for ≥4 months since kidney biopsy was rated to validate the SSR-recommended oral and intravenous (IV) CS dosages (step 6). Patient profile adjudication was based on majority ratings for both renal and extrarenal disease courses, and consensus level was set at 80%. Results: Degree of proteinuria, estimated glomerular filtration rate, changes in renal and extrarenal disease activity, and time since kidney biopsy influenced CS dosing (steps 1 and 2). Considering these parameters in 5,056 patient profile ratings from 103 raters, and renal and extrarenal course definitions, CS dosing rules of the SSR were developed (steps 3–5). Validation of the SSR for up to 6 months post–kidney biopsy was achieved with 1,838 patient profile ratings from 60 raters who achieved consensus for oral and IV CS dosage in accordance with the SSR (step 6). Conclusion: The SSR represents an international consensus on CS dosing for use in patients with childhood-onset SLE and proliferative LN. The SSR is anticipated to be used for clinical care and to standardize CS dosage during clinical trials. University of Cincinnati College of Medicine Baylor College of Medicine The Hospital for Sick Children and The University of Toronto Emory University and Children's Healthcare of Atlanta Sanjay Gandhi Postgraduate Institute of Medical Sciences Medical University of South Carolina KK Women's and Children's Hospital Cincinnati Children's Hospital Medical Center Hospital for Special Surgery Albert Einstein College of Medicine SRCC Children's Hospital Capital Medical University and National Center for Children's Health Universidade Federal do Rio de Janeiro Nationwide Children's Hospital University College London Cerrahpasa Medical School Istanbul University-Cerrahpasa University of Zagreb School of Medicine IWK Health Centre and Dalhousie University Hacettepe University Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children's Hospital of Chicago University of Campinas Hospital das Clínicas da Universidade Federal de Pernambuco National and Kapodistian University of Athens University Teknologi MARA Instituto Mexicano del Seguro Social University of Washington and Seattle Children's Hospital São Paulo State University Amsterdam University Medical Center Red Cross War Memorial Children's Hospital and University of Cape Town Universidade de São Paulo Hospital de la Beneficencia Española Universidade Federal de São Paulo National Medical Center La Raza Aristotle University of Thessaloniki King Faisal Specialist Hospital and Research Center and Alfaisal University University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center São Paulo State University CNPq: 303422/2015-7 FAPESP: FAPESP 2015/03756-4 National Institute of Arthritis and Musculoskeletal and Skin Diseases: P30-AR-076316 National Institute of Diabetes and Digestive and Kidney Diseases: P50-DK-096418 National Institute of Arthritis and Musculoskeletal and Skin Diseases: R34-AR-071651 National Center for Advancing Translational Sciences: T32-AR-050958
Published: 2021

14. Increased incidence of inflammatory bowel disease on etanercept in juvenile idiopathic arthritis regardless of concomitant methotrexate use

Author: van Straalen, Joeri W. Krol, Roline M. Giancane, Gabriella Panaviene, Violeta Ailioaie, Laura Marinela Doležalová, Pavla Cattalini, Marco Susic, Gordana Sztajnbok, Flavio Maritsi, Despoina Constantin, Tamas Sawhney, Sujata Rygg, Marite Oliveira, Sheila Knupp Nordal, Ellen Berit Saad-Magalhaes, Claudia Rubio-Perez, Nadina Jelusic, Marija de Roock, Sytze Wulffraat, Nico M. Ruperto, Nicolino Swart, Joost F.
Subjects: musculoskeletal diseases, digestive system diseases
Abstract: OBJECTIVES: To describe risk factors for inflammatory bowel disease (IBD) development in a cohort of children with juvenile idiopathic arthritis (JIA). METHODS: JIA patients who developed IBD were identified from the international Pharmachild register. Characteristics were compared between IBD and non-IBD patients and predictors of IBD were determined using multivariable logistic regression analysis. Incidence rates of IBD events on different disease-modifying anti-rheumatic drugs (DMARDs) were calculated, differences between therapies were expressed as relative risks (RR). RESULTS: Out of 8,942 patients, 48 (0.05\%) developed IBD. These were more often male (47.9\% vs 32.0\%) and HLA-B27 positive (38.2\% vs 21.0\%) and older at JIA onset (median 8.94 vs 5.33 years) than patients without IBD development. They also had more often a family history of autoimmune disease (42.6\% vs 24.4\%) and enthesitis-related arthritis (ERA) (39.6\% vs 10.8\%). The strongest predictors of IBD on multivariable analysis were ERA (OR: 3.68, 95\% CI: 1.41-9.40) and a family history of autoimmune disease (OR: 2.27, 95\% CI: 1.12-4.54). Compared with methotrexate monotherapy, the incidence of IBD on etanercept monotherapy (RR: 7.69, 95\% CI: 1.99-29.74), etanercept with methotrexate (RR: 5.70, 95\% CI: 1.42-22.77) and infliximab (RR: 7.61, 95\% CI: 1.27-45.57) therapy was significantly higher. Incidence on adalimumab was not significantly different (RR: 1.45, 95\% CI: 0.15-13.89). CONCLUSION: IBD in JIA was associated with ERA and a family history of autoimmune disease. An increased IBD incidence was observed for etanercept therapy regardless of concomitant methotrexate use.
Published: 2021

15. Etanercept reduces matrix metalloproteinase-9 level in children with polyarticular juvenile idiopathic arthritis and TNF-α-308GG genotype

Author: Basic, Jelena, Pavlovic, Dusica, Jevtovic-Stoimenov, Tatjana, Vojinovic, Jelena, Susic, Gordana, Stojanovic, Ivana, Kocic, Gordana, Milosevic, Vuk, Cvetkovic, Tatjana, Marinkovic, Milena, and Veljkovic, Andrej
Published: 2010
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16. Performance of Current Guidelines for Diagnosis of Macrophage Activation Syndrome Complicating Systemic Juvenile Idiopathic Arthritis

Author: Davì, Sergio, Minoia, Francesca, Pistorio, Angela, Horne, AnnaCarin, Consolaro, Alessandro, Rosina, Silvia, Bovis, Francesca, Cimaz, Rolando, Gamir, Maria Luz, Ilowite, Norman T., Kone-Paut, Isabelle, Feitosa de Oliveira, Sheila Knupp, McCurdy, Deborah, Silva, Clovis Artur, Sztajnbok, Flavio, Tsitsami, Elena, Unsal, Erbil, Weiss, Jennifer E., Wulffraat, Nico, Abinun, Mario, Aggarwal, Amita, Apaz, Maria Teresa, Astigarraga, Itziar, Corona, Fabrizia, Cuttica, Ruben, DʼAngelo, Gianfranco, Eisenstein, Eli M., Hashad, Soad, Lepore, Loredana, Mulaosmanovic, Velma, Nielsen, Susan, Prahalad, Sampath, Rigante, Donato, Stanevicha, Valda, Sterba, Gary, Susic, Gordana, Takei, Syuji, Trauzeddel, Ralf, Zletni, Mabruka, Ruperto, Nicolino, Martini, Alberto, Cron, Randy Q., and Ravelli, Angelo
Published: 2014
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17. Efficacy and safety of open-label etanercept on extended oligoarticular juvenile idiopathic arthritis, enthesitis-related arthritis and psoriatic arthritis: part 1 (week 12) of the CLIPPER study

Author: Horneff, Gerd, Burgos-Vargas, Ruben, Constantin, Tamas, Foeldvari, Ivan, Vojinovic, Jelena, Chasnyk, Vyacheslav G, Dehoorne, Joke, Panaviene, Violeta, Susic, Gordana, Stanevica, Valda, Kobusinska, Katarzyna, Zuber, Zbigniew, Mouy, Richard, Rumba-Rozenfelde, Ingrida, Breda, Luciana, Dolezalova, Pavla, Job-Deslandre, Chantal, Wulffraat, Nico, Alvarez, Daniel, Zang, Chuanbo, Wajdula, Joseph, Woodworth, Deborah, Vlahos, Bonnie, Martini, Alberto, and Ruperto, Nicolino
Published: 2014
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18. Validity and Reliability of Four Parent/Patient–Reported Outcome Measures for Juvenile Idiopathic Arthritis Remote Monitoring

Author: Dijkhuizen, E. H. Pieter, Ridella, Francesca, Naddei, Roberta, Trincianti, Chiara, Avrusin, Ilia, Mazzoni, Marta, Sutera, Diana, Ayaz, Nuray Aktay, Penades, Inmaculada Calvo, Constantin, Tamas, Herlin, Troels, Oliveira, Sheila K., Rygg, Marite, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Varbanova, Boriana, Ruperto, Nicolino, Ravelli, Angelo, and Consolaro, Alessandro
Abstract: The aim of this work was to provide evidence of validity and reliability for 4 parent/child–reported outcome measures included in the Outcome Measures in Rheumatology juvenile idiopathic arthritis core domain set: the evaluation of the child's pain and level of disease activity, the assessment of morning stiffness duration, and an active joint count for proxy/self‐assessment. Patients were included in the multinational study Epidemiology Treatment and Outcome of Childhood Arthritis. Criterion validity was assessed by examining the correlation of the 4 tested measures with physician measures and the clinical Juvenile Arthritis Disease Activity Score in 10 joints (cJADAS10) in the whole sample and after grouping patients by International League of Associations for Rheumatology (ILAR) category, geographic area, and education level. Reliability was assessed comparing 2 visits 7–14 days apart with intraclass correlation coefficients (ICCs). A total of 8,643 parents and 6,060 patients had all the evaluations available. Correlations of tested measures were moderate (0.4–0.7) with physician‐reported measures. The level of correlation with the cJADAS10 remained stable after grouping patients by ILAR category, geographic areas, and level of education of the parent filling the questionnaire. In 442 parents and 344 children, ICCs ranged between 0.79 and 0.87 for parents and 0.81 and 0.88 for children. The 4 tested parent/child–reported outcomes showed good criterion validity and excellent reliability. These tools can be considered for remote patient assessment, when in‐person evaluation might not be possible.
Published: 2023
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19. Opportunistic infections in immunosuppressed patients with juvenile idiopathic arthritis: analysis by the Pharmachild Safety Adjudication Committee

Author: Giancane, Gabriella, Swart, Joost F., Castagnola, Elio, Groll, Andreas H., Horneff, Gerd, Huppertz, Hans-Iko, Lovell, Daniel J., Wolfs, Tom, Herlin, Troels, Dolezalova, Pavla, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Maritsi, Despoina, Constantin, Tamas, Vargova, Veronika, Sawhney, Sujata, Rygg, Marite, Oliveira, Sheila K., Cattalini, Marco, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Giancane, Gabriella, Swart, Joost F., Castagnola, Elio, Groll, Andreas H., Horneff, Gerd, Huppertz, Hans-Iko, Lovell, Daniel J., Wolfs, Tom, Herlin, Troels, Dolezalova, Pavla, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Maritsi, Despoina, Constantin, Tamas, Vargova, Veronika, Sawhney, Sujata, Rygg, Marite, Oliveira, Sheila K., Cattalini, Marco, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, and Ruperto, Nicolino
Abstract: Background To derive a list of opportunistic infections (OI) through the analysis of the juvenile idiopathic arthritis (JIA) patients in the Pharmachild registry by an independent Safety Adjudication Committee (SAC). Methods The SAC (3 pediatric rheumatologists and 2 pediatric infectious disease specialists) elaborated and approved by consensus a provisional list of OI for use in JIA. Through a 5 step-procedure, all the severe and serious infections, classified as per MedDRA dictionary and retrieved in the Pharmachild registry, were evaluated by the SAC by answering six questions and adjudicated with the agreement of 3/5 specialists. A final evidence-based list of OI resulted by matching the adjudicated infections with the provisional list of OI. Results A total of 772 infectious events in 572 eligible patients, of which 335 serious/severe/very severe non-OI and 437 OI (any intensity/severity), according to the provisional list, were retrieved. Six hundred eighty-two of 772 (88.3%) were adjudicated as infections, of them 603/682 (88.4%) as common and 119/682 (17.4%) as OI by the SAC. Matching these 119 opportunistic events with the provisional list, 106 were confirmed by the SAC as OI, and among them infections by herpes viruses were the most frequent (68%), followed by tuberculosis (27.4%). The remaining events were divided in the groups of non-OI and possible/patient and/or pathogen-related OI. Conclusions We found a significant number of OI in JIA patients on immunosuppressive therapy. The proposed list of OI, created by consensus and validated in the Pharmachild cohort, could facilitate comparison among future pharmacovigilance studies.
Published: 2020

20. Opportunistic infections in immunosuppressed patients with juvenile idiopathic arthritis: Analysis by the Pharmachild Safety Adjudication Committee

Author: Immuno/reuma patientenzorg, Child Health, Infectieziekten patientenzorg, Infection & Immunity, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Giancane, Gabriella, Swart, Joost F., Castagnola, Elio, Groll, Andreas H., Horneff, Gerd, Huppertz, Hans Iko, Lovell, Daniel J., Wolfs, Tom, Herlin, Troels, Dolezalova, Pavla, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Maritsi, Despoina, Constantin, Tamas, Vargova, Veronika, Sawhney, Sujata, Rygg, Marite, Oliveira, Sheila K., Cattalini, Marco, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Cuttica, Ruben, Garay, Stella Maris, Brunner, Jurgen, Emminger, Wolfgang, Appenzeller, Simone, Len, Claudio, Saad Magalhaes, Claudia, Telcharova-Mihaylovska, Albena, Harjacek, Miroslav, Jelusic, Marija, Estmann, Anne, Nielsen, Susan, Herrera Mora, Cristina, Gervais, Elisabeth, Koné-Paut, Isabelle, Quartier, Pierre, Foeldvari, Ivan, Lutz, Thomas, Minden, Kirsten, Tzaribachev, Nikolay, Trachana, Maria, Tsitsami, Elena, Vougiouka, Olga, Orban, Ilonka, Harel, Liora, Hashkes, Philip, Uziel, Yosef, Cimaz, Rolando, Civino, Adele, Consolini, Rita, D'Angelo, Gianfranco, De Benedetti, Fabrizio, Filocamo, Giovanni, Fueri, Elena, Gallizzi, Romina, Maggio, Maria Cristina, Magnolia, Maria Greca, Miniaci, Angela, Montin, Davide, Olivieri, Alma Nunzia, Pastore, Serena, Rigante, Donato, Zulian, Francesco, Rumba-Rozenfelde, Ingrida, Stanevicha, Valda, Panaviene, Violeta, Rodriguez Lozano, Ana Luisa, Rubio-Perez, Nadina, Vega Cornejo, Gabriel, Hoppenreijs, Esther, Kamphuis, Sylvia, Flato, Berit, Nordal, Ellen Berit, Abdwani, Reem, Miraval, Tatiana, Paz Gastanaga, Maria Eliana, Smolewska, Elzbieta, Ailioaie, Constantin, Cochino, Alexis Virgil, Laday, Matilda, Lazar, Calin, Alexeeva, Ekaterina, Chasnyk, Vyacheslav, Keltsev, Vladimir, Suwairi, Wafaa Mohammed Saad, Vijatov-Djuric, Gordana, Vojinovic, Jelena, Arkachaisri, Thaschawee, Koskova, Elena, Avcin, Tadej, Ally, Mahmood, Van Rensburg, Christa Janse, Louw, Ingrid, Lopez, Jordi Anton, Boteanu, Alina Lucica, Calvo Penades, Inmaculada, De Inocencio, Jaime, Mesa-Del-Castillo, Pablo, Moreno, Estefania, Remesal, Agustin, Hofer, Michael, Gok, Faysal, Ozen, Seza, Ramanan, Athimalaipet, Pallotti, Chiara, Villa, Luca, Immuno/reuma patientenzorg, Child Health, Infectieziekten patientenzorg, Infection & Immunity, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Giancane, Gabriella, Swart, Joost F., Castagnola, Elio, Groll, Andreas H., Horneff, Gerd, Huppertz, Hans Iko, Lovell, Daniel J., Wolfs, Tom, Herlin, Troels, Dolezalova, Pavla, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Maritsi, Despoina, Constantin, Tamas, Vargova, Veronika, Sawhney, Sujata, Rygg, Marite, Oliveira, Sheila K., Cattalini, Marco, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Cuttica, Ruben, Garay, Stella Maris, Brunner, Jurgen, Emminger, Wolfgang, Appenzeller, Simone, Len, Claudio, Saad Magalhaes, Claudia, Telcharova-Mihaylovska, Albena, Harjacek, Miroslav, Jelusic, Marija, Estmann, Anne, Nielsen, Susan, Herrera Mora, Cristina, Gervais, Elisabeth, Koné-Paut, Isabelle, Quartier, Pierre, Foeldvari, Ivan, Lutz, Thomas, Minden, Kirsten, Tzaribachev, Nikolay, Trachana, Maria, Tsitsami, Elena, Vougiouka, Olga, Orban, Ilonka, Harel, Liora, Hashkes, Philip, Uziel, Yosef, Cimaz, Rolando, Civino, Adele, Consolini, Rita, D'Angelo, Gianfranco, De Benedetti, Fabrizio, Filocamo, Giovanni, Fueri, Elena, Gallizzi, Romina, Maggio, Maria Cristina, Magnolia, Maria Greca, Miniaci, Angela, Montin, Davide, Olivieri, Alma Nunzia, Pastore, Serena, Rigante, Donato, Zulian, Francesco, Rumba-Rozenfelde, Ingrida, Stanevicha, Valda, Panaviene, Violeta, Rodriguez Lozano, Ana Luisa, Rubio-Perez, Nadina, Vega Cornejo, Gabriel, Hoppenreijs, Esther, Kamphuis, Sylvia, Flato, Berit, Nordal, Ellen Berit, Abdwani, Reem, Miraval, Tatiana, Paz Gastanaga, Maria Eliana, Smolewska, Elzbieta, Ailioaie, Constantin, Cochino, Alexis Virgil, Laday, Matilda, Lazar, Calin, Alexeeva, Ekaterina, Chasnyk, Vyacheslav, Keltsev, Vladimir, Suwairi, Wafaa Mohammed Saad, Vijatov-Djuric, Gordana, Vojinovic, Jelena, Arkachaisri, Thaschawee, Koskova, Elena, Avcin, Tadej, Ally, Mahmood, Van Rensburg, Christa Janse, Louw, Ingrid, Lopez, Jordi Anton, Boteanu, Alina Lucica, Calvo Penades, Inmaculada, De Inocencio, Jaime, Mesa-Del-Castillo, Pablo, Moreno, Estefania, Remesal, Agustin, Hofer, Michael, Gok, Faysal, Ozen, Seza, Ramanan, Athimalaipet, Pallotti, Chiara, and Villa, Luca
Published: 2020

21. Increased incidence of inflammatory bowel disease on etanercept in juvenile idiopathic arthritis regardless of concomitant methotrexate use.

Author: Straalen, Joeri W van, Krol, Roline M, Giancane, Gabriella, Panaviene, Violeta, Ailioaie, Laura Marinela, Doležalová, Pavla, Cattalini, Marco, Susic, Gordana, Sztajnbok, Flavio R, Maritsi, Despoina, Constantin, Tamas, Sawhney, Sujata, Rygg, Marite, Oliveira, Sheila Knupp, Nordal, Ellen Berit, Saad-Magalhães, Claudia, Rubio-Perez, Nadina, Jelusic, Marija, Roock, Sytze de, and Wulffraat, Nico M
Subjects: INFLAMMATORY bowel diseases, CONFIDENCE intervals, MULTIPLE regression analysis, MULTIVARIATE analysis, JUVENILE idiopathic arthritis, AUTOIMMUNE diseases, METHOTREXATE, RISK assessment, COMPARATIVE studies, DESCRIPTIVE statistics, ODDS ratio, ETANERCEPT, FAMILY history (Medicine), DISEASE risk factors, DISEASE complications, CHILDREN
Abstract: Objective To describe risk factors for IBD development in a cohort of children with JIA. Methods JIA patients who developed IBD were identified from the international Pharmachild register. Characteristics were compared between IBD and non-IBD patients and predictors of IBD were determined using multivariable logistic regression analysis. Incidence rates of IBD events on different DMARDs were calculated, and differences between therapies were expressed as relative risks (RR). Results Out of 8942 patients, 48 (0.54%) developed IBD. These were more often male (47.9% vs 32.0%) and HLA-B27 positive (38.2% vs 21.0%) and older at JIA onset (median 8.94 vs 5.33 years) than patients without IBD development. They also had more often a family history of autoimmune disease (42.6% vs 24.4%) and enthesitis-related arthritis (39.6% vs 10.8%). The strongest predictors of IBD on multivariable analysis were enthesitis-related arthritis [odds ratio (OR): 3.68, 95% CI: 1.41, 9.40] and a family history of autoimmune disease (OR: 2.27, 95% CI: 1.12, 4.54). Compared with methotrexate monotherapy, the incidence of IBD on etanercept monotherapy (RR: 7.69, 95% CI: 1.99, 29.74), etanercept with methotrexate (RR: 5.70, 95% CI: 1.42, 22.77) and infliximab (RR: 7.61, 95% CI: 1.27, 45.57) therapy was significantly higher. Incidence on adalimumab was not significantly different (RR: 1.45, 95% CI: 0.15, 13.89). Conclusion IBD in JIA was associated with enthesitis-related arthritis and a family history of autoimmune disease. An increased IBD incidence was observed for etanercept therapy regardless of concomitant methotrexate use. [ABSTRACT FROM AUTHOR]
Published: 2022
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22. Safety and Efficacy of An Oral Histone Deacetylase Inhibitor in Systemic-Onset Juvenile Idiopathic Arthritis

Author: Vojinovic, Jelena, Damjanov, Nemanja, DʼUrzo, Carmine, Furlan, Antonio, Susic, Gordana, Pasic, Srdjan, Iagaru, Nicola, Stefan, Mariana, and Dinarello, Charles A.
Published: 2011
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23. Methotrexate Withdrawal at 6 vs 12 Months in Juvenile Idiopathic Arthritis in Remission: A Randomized Clinical Trial

Author: Foell, Dirk, Wulffraat, Nico, Wedderburn, Lucy R., Wittkowski, Helmut, Frosch, Michael, Ger, Joachim, Stanevicha, Valda, Mihaylova, Dimitrina, Ferriani, Virginia, Tsakalidou, Florence Kanakoudi, Foeldvari, Ivan, Cuttica, Ruben, Gonzalez, Benito, Ravelli, Angelo, Khubchandani, Raju, Oliveira, Sheila, Armbrust, Wineke, Garay, Stella, Vojinovic, Jelena, Norambuena, Ximena, Gamir, María Luz, García-Consuegra, Julia, Lepore, Loredana, Susic, Gordana, Corona, Fabrizia, Dolezalova, Pavla, Pistorio, Angela, Martini, Alberto, Ruperto, Nicolino, and Roth, Johannes
Published: 2010

24. Proceedings of the 24th Paediatric Rheumatology European Society Congress: Part three

Author: Atsali, Erato, Kassara, Dimitra, Katsimbri, Pelagia, Boiu, Sorina, Boumpas, Dimitrios T., Papaevangelou, Vana, Oshlyanska, Olena A., Omelchenko, Ludmila I., Ljudvik, Tatiana A., Bouchalova, Katerina, Schüller, Marcel, Franova, Jana, Skotakova, Jarmila, Macku, Marie, Fellas, Antoni, Hawke, Fiona, Santos, Derek, Coda, Andrea, Kelempisioti, Anthi, Keskitalo, Paula, Glumoff, Virpi, Kulmala, Petri, Vahasalo, Paula, Mozaffar, Mohammed A., Turkistani, Asraa K., Sangoof, Samaa O., Sevostyanov, Vladislav, Zholobova, Elena, Bountouvi, Evangelia, Theodoropoulos, konstantinos, Moutsiou, Renata, Tsalapaki, Christina, Diaz, Talia, Osorio, Sofia, Braña, Maria Teresa, Ramirez, Yuridiana, Aparicio, Luis, Rodriguez, Andres, Faugier, Enrique, Maldonado, Rocio, Gicchino, Maria Francesca, Granato, Carmela, Macchini, Giulia, Capalbo, Daniela, Olivieri, Alma Nunzia, Hasson, Nathan, Marino, Achille, Narula, Sona, Lerman, Melissa, Calonge, Maria Amelia Muñoz, Loza, Sara Maria Murias, Alcobendas, Rosa Maria, Remesal, Agustin, Núñez-Cuadros, Esmeralda, Zavala, Rocio Galindo, Rego, Gisela Díaz-Cordovés, Fernández, Cristina Antúnez, Molina, Yaiza García, Cardona, Antonio L. Urda, Sahin, Nihal, Durmus, Habibe S., Pinarbasi, Ayse S., Gunduz, Zubeyde, Poyrazoglu, Muammer H., Karaman, Zehra F., Oktem, Turhan, Oner, Mithat, Dusunsel, Ruhan, Susic, Gordana, Krstajic, Tamara, Vujovic, Dragana, Radlovic, Nedeljko, Lekovic, Zoran, Novakovic, Dusica, Lomic, Gordana Milosevski, Mördrup, Karina, Hesselstrand, Gunilla, Sorić, Iva, Lamot, Lovro, Vidovic, Mandica, Lamot, Mirta, Harjacek, Miroslav, Adank, Eva, Schneider, Elvira Cannizzaro, Abdalla, Eiman, Ullah, Irfan, Jeyaseelan, L., Abdwani, Reem, Shaqsi, Laila A. L., Zakwani, Ibrahim A. l., Fanouriakis, Antonis, Janarthanan, Mahesh, Vetrichelvan, Dhanarathnamoorthy, Ramachandran, P., Geminiganesan, Sangeetha, Kumar, Dinesh, Rao, Subba, Papatesta, Eleni-Maria, Maritsi, Despoina, Eleftheriou, Irini, Tsolia, Maria, Vougiouka, Olga, Çakan, Mustafa, Ayaz, Nuray Aktay, Karadağ, Şerife Gül, Keskindemirci, Gonca, Keltsev, Vladimir, Grebenkina, Lyudmila, Kim, Kwang Nam, Ahn, Jong Gyun, Kim, Young Dae, Maggio, Maria Cristina, Cimaz, Rolando, Failla, Maria Concetta, Dones, Piera, Collura, Mirella, Corsello, Giovanni, Rhim, Jung-Woo, Kim, Ki-Hwan, Lee, Soo-Young, Han, Seung-Beom, Kang, Jin-Han, Chung, Jae-Hee, Lee, Soo-Jung, Jeong, Dae-Chul, Santimov, Andrei, Rupp, Regina, Alekseev, Igor, Plutova, Natalya, Moskvina, Ekaterina, Kruchina, Marina, Tarasenko, Aleksandra, Sokolova, Natalya, Saveleva, Ekaterina, Bogdanov, Ilia, Ivanov, Dmitrii, Kandrina, Tatiana, Kopanevich, Olga, Grafskaia, Anastasiia, Ignateva, Natalia, Pulukchu, Daria, Pavlova, Natalia, Kalashnikova, Olga, Kornishina, Tatiana, Dubko, Margarita, Chasnyk, Vyacheslav, Kostik, Mikhail, Sowdagar, Shama, Sankar, Janani, Ramesh, Venkateswari, Szabo, Iulia E., Sirbe, Claudia, Pamfil, Cristina, Damian, Laura, Rednic, Simona, Deac, Maria, Sparchez, Mihaela, Filipescu, Ileana, Parvu, Mirela, Balint, Dumitrita, and Nicoara, Ancuta
Subjects: lcsh:Diseases of the musculoskeletal system, lcsh:RJ1-570, lcsh:Pediatrics, lcsh:RC925-935, Meeting Abstracts
Published: 2017

25. Correspondance on 'Clinical characteristics and genetic analyses of 187 patients with undefined autoinflammatory diseases'

Author: Ter Haar, Nienke, Eijkelboom, Charlotte, Cantarini, Luca, Papa, Riccardo, Brogan, Paul, Kone-Paut, Isabelle, Modesto, Consuelo, Hofer, Michael, Iagaru, Nicolae, Fingerhutová, Sárka, Insalaco, Antonella, Licciardi, Francesco, Uziel, Yosef, Jelusic, Marija, Nikishina, Irina, Searles Nielsen, Susan, Papadopoulou-Alataki, Efimia, Nunzia Olivieri, Alma, Cimaz, Rolando, Susic, Gordana, Stanevica, Valda, Van Gijn, Marielle E, Vitale, Antonio, Ruperto, Nicolino, Frenkel, Joost, Gattorno, Marco, University Medical Center [Utrecht], Università degli Studi di Siena = University of Siena (UNISI), Istituto Giannina Gaslini, Genova, Immunologia Clinica e Sperimentale, University College of London [London] (UCL), Service de Rhumatologie [CHU Bicêtre], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Bicêtre, Vall d'Hebron Institute of Oncology [Barcelone] (VHIO), Vall d'Hebron University Hospital [Barcelona], Centre Hospitalier Universitaire Vaudois [Lausanne] (CHUV), First Faculty of Medicine Charles University [Prague], IRCCS Ospedale Pediatrico Bambino Gesù [Roma], Università degli studi di Torino (UNITO), Kfar Saba and Sackler School of Medicine, University Hospital Centre Zagreb, Partenaires INRAE, Rigshospitalet [Copenhagen], Copenhagen University Hospital, Aristotle University of Thessaloniki, University of the Study of Campania Luigi Vanvitelli, University of Milan, Institute for Rheumatology, Belgrade, Riga Stradins University (RSU), and IRCCS Istituto Giannina Gaslini [Genoa, Italy]
Subjects: [SDV.MHEP.RSOA]Life Sciences [q-bio]/Human health and pathology/Rhumatology and musculoskeletal system, [SDV.IMM]Life Sciences [q-bio]/Immunology
Abstract: International audience; Objectives To describe the clinical characteristics, treatment response and genetic findings in a large cohort of patients with undefined systemic autoinflammatory diseases (SAIDs).Methods Clinical and genetic data from patients with undefined SAIDs were extracted from the Eurofever registry, an international web-based registry that retrospectively collects clinical information on patients with autoinflammatory diseases.Results This study included 187 patients. Seven patients had a chronic disease course, 180 patients had a recurrent disease course. The median age at disease onset was 4.3 years. Patients had a median of 12 episodes per year, with a median duration of 4 days. Most commonly reported symptoms were arthralgia (n=113), myalgia (n=86), abdominal pain (n=89), fatigue (n=111), malaise (n=104) and mucocutaneous manifestations (n=128). In 24 patients, relatives were affected as well. In 15 patients, genetic variants were found in autoinflammatory genes. Patients with genetic variants more often had affected relatives compared with patients without genetic variants (p=0.005). Most patients responded well to non-steroidal anti-inflammatory drugs (NSAIDs), corticosteroids, colchicine and anakinra. Complete remission was rarely achieved with NSAIDs alone. Notable patterns were found in patients with distinctive symptoms. Patients with pericarditis (n=11) were older at disease onset (33.8 years) and had fewer episodes per year (3.0/year) compared with other patients. Patients with an intellectual impairment (n=8) were younger at disease onset (2.2 years) and often had relatives affected (28.6%).ConclusionThis study describes the clinical characteristics of a large cohort of patients with undefined SAIDs. Among these, patients with pericarditis and intellectual impairment appear to comprise distinct subsets.
Published: 2019

26. Clinical characteristics and genetic analyses of 187 patients with undifferentiated recurrent fever

Author: Ter Haar, Nienke, Eijkelboom, Charlotte, Cantarini, Luca, Papa, Riccardo, Brogan, Paul, Koné-Paut, Isabelle, Modesto, Consuelo, Hofer, Michael, Iaguru, Nicolae, Fingerhutová, Sárka, Insalaco, Antonella, Licciardi, Francesco, Uziel, Yosef, Jelušić, Marija, Nikishina, Irina, Nielsen, Susan, Papadopoulou-Alataki, Efimia, Olivieri, Alma Nunzia, Cimaz, Rolando, Susic, Gordana, Staņēviča, Valda, van Gijn, Marielle, Vitale, Antonio, Ruperto, Nicolino, Frenkel, Joost, and Gattorno, Marco
Subjects: Autoinflammatory diseases, Recurrent fever, Inflammation, Eurofever
Abstract: Objectives: To describe the clinical characteristics, treatment response and genetic findings in the largest cohort of patients with syndrome of undifferentiated recurrent fever (SURF). Methods: Clinical and genetic data from patients with SURF were extracted from the Eurofever registry, an international web-based registry that retrospectively collects clinical information on patients with autoinflammatory diseases. Results: In this study 202 patients were included. Seven patients had a chronic disease course, 195 patients had a recurrent disease course. The median age at disease onset was 4.6 years. Patients had a median of 12 episodes per year, with a median duration of 4 days. In 25 patients relatives were affected as well. Most commonly reported symptoms were arthralgia (n=125), myalgia (n=95), abdominal pain (n=98), fatigue (n=120), malaise (n=112), and mucocutaneous manifestations (n=139). In 17 patients genetic variants were found in autoinflammatory genes. These patients more often had affected relatives compared to patients without genetic variants (p=0.002). Most patients responded well to NSAIDs, corticosteroids, colchicine and anakinra. Complete remission was rarely achieved with NSAIDs alone. Notable patterns were found in patients with distinctive symptoms. Patients with pericarditis (n=12) were older at disease onset (32.3 years), and had fewer episodes per year (3.0/year) compared to other patients. Patients with an intellectual impairment (n=8) were younger at disease onset (2.2 years) and often had relatives affected (28.6%). Conclusion: This study describes the clinical characteristics in the largest cohort of SURF patients. Patients with genetic variants found more often had relatives affected.
Published: 2019

27. Systemic sclerosis in childhood: Clinical and immunologic features of 153 patients in an international database

Author: Martini, Giorgia, Foeldvari, Ivan, Russo, Ricardo, Cuttica, Ruben, Eberhard, Anne, Ravelli, Angelo, Lehman, Thomas J. A., de Oliveira, Sheila Knupp Feitosa, Susic, Gordana, Lyskina, Galina, Nemcova, Dana, Sundel, Robert, Falcini, Fernanda, Girschick, Herman, Lotito, Ana Paula, Buoncompagni, Antonella, Sztajnbok, Flavio, Al-Mayouf, Sulaiman M., Orbàn, Ilonka, Ferri, Clodoveo, Athreya, Balu H., Woo, Patricia, and Zulian, Francesco
Published: 2006

28. The Pediatric Rheumatology International Trials Organization Criteria for the Evaluation of Response to Therapy in Juvenile Systemic Lupus Erythematosus: Prospective Validation of the Disease Activity Core Set

Author: Ruperto, Nicolino, Ravelli, Angelo, Cuttica, Ruben, Espada, Graciela, Ozen, Seza, Porras, Oscar, Sztajnbok, Flavio, Falcini, Fernanda, Kasapcopur, Ozgur, Venning, Helen, Bica, Blanca, Merino, Rosa, Coto, Cecilia, Ros, Joan, Susic, Gordana, Gamir, María Luz, Minden, Kirsten, See, Yvonne, Uziel, Yosef, Mukamel, Masha, Riley, Phil, Zulian, Francesco, Olivieri, Alma Nunzia, Cimaz, Rolando, Girschick, Hermann, Rumba, Ingrida, Cavuto, Silvio, Pistorio, Angela, Lovell, Daniel J., and Martini, Alberto
Published: 2005

29. The European network for care of children with paediatric rheumatic diseases : Care across borders

Author: Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, Boyko, Yaryna, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, and Boyko, Yaryna
Published: 2019

30. Etanercept treatment for extended oligoarticular juvenile idiopathic arthritis, enthesitis-related arthritis, or psoriatic arthritis: 6-year efficacy and safety data from an open-label trial

Author: Foeldvari, Ivan, Constantin, Tamas, Vojinovic, Jelena, Horneff, Gerd, Chasnyk, Vyacheslav, Dehoorne, Joke, Panaviene, Violeta, Susic, Gordana, Stanevicha, Valda, Kobusinska, Katarzyna, Zuber, Zbigniew, Dobrzyniecka, Bogna, Nikishina, Irina, Bader-Meunier, Brigitte, Breda, Luciana, Dolezalova, Pavla, Job-Deslandre, Chantal, Rumba-Rozenfelde, Ingrida, Wulffraat, Nico, Pedersen, Ronald D., Bukowski, Jack F., Vlahos, Bonnie, Martini, Alberto, Ruperto, Nicolino, Foeldvari, Ivan, Constantin, Tamas, Vojinovic, Jelena, Horneff, Gerd, Chasnyk, Vyacheslav, Dehoorne, Joke, Panaviene, Violeta, Susic, Gordana, Stanevicha, Valda, Kobusinska, Katarzyna, Zuber, Zbigniew, Dobrzyniecka, Bogna, Nikishina, Irina, Bader-Meunier, Brigitte, Breda, Luciana, Dolezalova, Pavla, Job-Deslandre, Chantal, Rumba-Rozenfelde, Ingrida, Wulffraat, Nico, Pedersen, Ronald D., Bukowski, Jack F., Vlahos, Bonnie, Martini, Alberto, and Ruperto, Nicolino
Abstract: BackgroundTo describe the 6-year safety and efficacy of etanercept (ETN) in children with extended oligoarticular juvenile idiopathic arthritis (eoJIA), enthesitis-related arthritis (ERA), and psoriatic arthritis (PsA)MethodsPatients who completed the 2-year, open-label, phase III CLinical Study In Pediatric Patients of Etanercept for Treatment of ERA, PsA, and Extended Oligoarthritis (CLIPPER) were allowed to enroll in its 8-year long-term extension (CLIPPER2). Children received ETN at a once-weekly dose of 0.8mg/kg, up to a maximum dose of 50mg/week. Efficacy assessments included the JIA core set of outcomes, the JIA American College of Rheumatology response criteria (JIA-ACR), and the Juvenile Arthritis Disease Activity Score (JADAS). Efficacy data are reported as responder analyses using a hybrid method for missing data imputation and as observed cases. Safety assessments included treatment-emergent adverse events (TEAEs).ResultsOut of 127 patients originally enrolled in CLIPPER, 109 (86%) entered CLIPPER2. After 6years of trial participation (2years in CLIPPER and 4years in CLIPPER2), 41 (32%) patients were still taking ETN, 13 (11%) entered the treatment withdrawal phase after achieving low/inactive disease (of whom 7 had to restart ETN), 36 (28%) discontinued treatment for other reasons but are still being observed, and 37 (29%) discontinued treatment permanently. According to the hybrid imputation analysis, proportions of patients achieving JIA ACR90, JIA ACR100, and JADAS inactive disease after the initial 2years of treatment were 58%, 48%, and 32%, respectively. After the additional 4years, those proportions in patients who remained in the trial were 46%, 35%, and 24%. Most frequently reported TEAEs [n (%), events per 100 patient-years] were headache [28 (22%), 5.3], arthralgia [24 (19%), 4.6], and pyrexia [20 (16%), 3.8]. Number and frequency of TEAEs, excluding infections and injection site reactions, decreased over the 6-year period from 193 and 173.8
Published: 2019

31. The European network for care of children with paediatric rheumatic diseases: Care across borders

Author: UMC Utrecht, Immuno/reuma onderzoek 1 (Vastert), Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Child Health, Infection & Immunity, Immunologie/Reumatologie, Cluster B, Onderzoek, Regenerative Medicine and Stem Cells, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, Boyko, Yaryna, UMC Utrecht, Immuno/reuma onderzoek 1 (Vastert), Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Child Health, Infection & Immunity, Immunologie/Reumatologie, Cluster B, Onderzoek, Regenerative Medicine and Stem Cells, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, and Boyko, Yaryna
Published: 2019

32. Childhood Sjögren syndrome: features of an international cohort and application of the 2016 ACR/EULAR classification criteria.

Author: Basiaga, Matthew L, Stern, Sara M, Mehta, Jay J, Edens, Cuoghi, Randell, Rachel L, Pomorska, Anna, Irga-Jaworska, Ninela, Ibarra, Maria F, Bracaglia, Claudia, Nicolai, Rebecca, Susic, Gordana, Boneparth, Alexis, Srinivasalu, Hemalatha, Dizon, Brian, Kamdar, Ankur A, Goldberg, Baruch, Knupp-Oliveira, Sheila, Antón, Jordi, Mosquera, Juan M, and Appenzeller, Simone
Subjects: SJOGREN'S syndrome diagnosis, PAROTITIS, RETROSPECTIVE studies, JOINT pain, SYMPTOMS, DESCRIPTIVE statistics, SJOGREN'S syndrome, CHILDREN
Abstract: Objective Sjögren syndrome in children is a poorly understood autoimmune disease. We aimed to describe the clinical and diagnostic features of children diagnosed with Sjögren syndrome and explore how the 2016 ACR/EULAR classification criteria apply to this population. Methods An international workgroup retrospectively collected cases of Sjögren syndrome diagnosed under 18 years of age from 23 centres across eight nations. We analysed patterns of symptoms, diagnostic workup, and applied the 2016 ACR/EULAR classification criteria. Results We identified 300 children with Sjögren syndrome. The majority of patients n = 232 (77%) did not meet 2016 ACR/EULAR classification criteria, but n = 110 (37%) did not have sufficient testing done to even possibly achieve the score necessary to meet criteria. Even among those children with all criteria items tested, only 36% met criteria. The most common non-sicca symptoms were arthralgia [ n = 161 (54%)] and parotitis [ n = 140 (47%)] with parotitis inversely correlating with age. Conclusion Sjögren syndrome in children can present at any age. Recurrent or persistent parotitis and arthralgias are common symptoms that should prompt clinicians to consider the possibility of Sjögren syndrome. The majority of children diagnosed with Sjögren syndromes did not meet 2016 ACR/EULAR classification criteria. Comprehensive diagnostic testing from the 2016 ACR/EULAR criteria are not universally performed. This may lead to under-recognition and emphasizes a need for further research including creation of paediatric-specific classification criteria. [ABSTRACT FROM AUTHOR]
Published: 2021
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33. Clinical characteristics and genetic analyses of 187 patients with undefined autoinflammatory diseases

Author: Ter Haar, Nienke M, primary, Eijkelboom, Charlotte, additional, Cantarini, Luca, additional, Papa, Riccardo, additional, Brogan, Paul A, additional, Kone-Paut, Isabelle, additional, Modesto, Consuelo, additional, Hofer, Michael, additional, Iagaru, Nicolae, additional, Fingerhutová, Sárka, additional, Insalaco, Antonella, additional, Licciardi, Francesco, additional, Uziel, Yosef, additional, Jelusic, Marija, additional, Nikishina, Irina, additional, Nielsen, Susan, additional, Papadopoulou-Alataki, Efimia, additional, Olivieri, Alma Nunzia, additional, Cimaz, Rolando, additional, Susic, Gordana, additional, Stanevica, Valda, additional, van Gijn, Marielle, additional, Vitale, Antonio, additional, Ruperto, Nicolino, additional, Frenkel, Joost, additional, and Gattorno, Marco, additional
Published: 2019
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34. OP0058 DEVELOPMENT OF INFLAMMATORY BOWEL DISEASE DURING TREATMENT WITH ETANERCEPT IN PATIENTSWITH JUVENILE IDIOPATHIC ARTHRITIS

Author: Krol, Roline, primary, Swart, Joost F., additional, Giancane, Gabriella, additional, Roock, Sytze De, additional, Herlin, Troels, additional, Dolezalova, Pavla, additional, Sanner, Helga, additional, Susic, Gordana, additional, Sztajnbok, Flávio R., additional, Maritsi, D, additional, Constantin, Tamas, additional, Vargova, V, additional, Sawhney, Sujata, additional, Rygg, Marite, additional, Oliveira, Sheila Knupp D.E., additional, Cattalini, Marco, additional, Nordal, Ellen, additional, Magalhaes, Claudia, additional, Martini, Alberto, additional, Wulffraat, Nico, additional, and Ruperto, Nicolino, additional
Published: 2019
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35. Phenotypic variability and disparities in treatment and outcomes of childhood arthritis throughout the world: an observational cohort study

Author: Consolaro, Alessandro, primary, Giancane, Gabriella, additional, Alongi, Alessandra, additional, van Dijkhuizen, Evert Hendrik Pieter, additional, Aggarwal, Amita, additional, Al-Mayouf, Sulaiman M, additional, Bovis, Francesca, additional, De Inocencio, Jaime, additional, Demirkaya, Erkan, additional, Flato, Berit, additional, Foell, Dirk, additional, Garay, Stella Maris, additional, Lazăr, Călin, additional, Lovell, Daniel J, additional, Montobbio, Carolina, additional, Miettunen, Paivi, additional, Mihaylova, Dimitrina, additional, Nielsen, Susan, additional, Orban, Ilonka, additional, Rumba-Rozenfelde, Ingrida, additional, Magalhães, Claudia Saad, additional, Shafaie, Nahid, additional, Susic, Gordana, additional, Trachana, Maria, additional, Wulffraat, Nico, additional, Pistorio, Angela, additional, Martini, Alberto, additional, Ruperto, Nicolino, additional, Ravelli, Angelo, additional, Abdwani, Reem, additional, Aghighi, Yahya, additional, Aiche, Maya-Feriel, additional, Ailioaie, Constantin, additional, Aktay Ayaz, Nuray, additional, Al-Abrawi, Safiya, additional, Alexeeva, Ekaterina, additional, Anton, Jordi, additional, Apostol, Adriana, additional, Arguedas, Olga, additional, Avcin, Tadej, additional, Barone, Patrizia, additional, Berntson, Lillemor, additional, Boteanu, Alina Lucica, additional, Boyko, Yaryna, additional, Burgos-Vargas, Ruben, additional, Calvo Penades, Inmaculada, additional, Chédeville, Gaëlle, additional, Cimaz, Rolando, additional, Civino, Adele, additional, Consolini, Rita, additional, Constantin, Tamas, additional, Cuttica, Ruben, additional, Dallos, Tomas, additional, Martin, Neil, additional, Magni Manzoni, Silvia, additional, De Cunto, Carmen, additional, Dolezalova, Pavla, additional, Ekelund, Maria, additional, El Miedany, Yasser, additional, Espada, Graciela, additional, Estmann Christensen, Anne, additional, Foeldvari, Ivan, additional, Gallizzi, Romina, additional, Ganser, Gerd, additional, Gerloni, Valeria, additional, Haas, Johannes-Peter, additional, Harel, Liora, additional, Harjacek, Miroslav, additional, Hashad, Soad, additional, Herlin, Troels, additional, Herrera, Cristina, additional, Hofer, Michael, additional, Holzinger, Dirk, additional, Horneff, Gerd, additional, Huppertz, Hans-Iko, additional, Iagăru, Nicolae, additional, Ibanez Estrella, Amparo, additional, Ioseliani, Maka, additional, Joos, Rik, additional, Knupp Oliveira, Sheila, additional, Kamphuis, Sylvia, additional, Kasapcopur, Ozgur, additional, Katsicas, Maria Martha, additional, Khubchandani, Raju, additional, Kondi, Anuela, additional, Kröger, Liisa, additional, La Torre, Francesco, additional, Laday, Matilda, additional, Lahdenne, Pekka, additional, Maggio, Maria Cristina, additional, Magnolia, Maria Greca, additional, Malagon, Clara, additional, Malin, Merja, additional, Martino, Silvana, additional, Melo-Gomes, Jose Antonio, additional, Mesa-del-Castillo, Pablo, additional, Militaru, Andrea, additional, Minden, Kirsten, additional, Miniaci, Angela, additional, Moradinejad, Mohammad Hasan, additional, Morel Ayala, Zoilo, additional, Nikishina, Irina, additional, Norambuena, Ximena, additional, Nordal, Ellen Berit, additional, Pagava, Karaman, additional, Panaviene, Violeta, additional, Pastore, Serena, additional, Pieropan, Sara, additional, Podda, Rosa Anna, additional, Pruunsild, Chris, additional, Putto-Laurila, Anne, additional, Quartier, Pierre, additional, Remesal, Agustin, additional, Rigante, Donato, additional, Ringold, Sarah, additional, Rutkowska-Sak, Lidia, additional, Rygg, Marite, additional, Saurenmann, Rotraud Katharina, additional, Sawhney, Sujata, additional, Scott, Christiaan, additional, Shiari, Reza, additional, Smolewska, Elzbieta, additional, Sozeri, Betul, additional, Swart, Joost Frans, additional, Sztajnbok, Flavio, additional, Torcoletti, Marta, additional, Tsitsami, Elena, additional, Tzaribachev, Nikolay, additional, Unsal, Erbil, additional, Uziel, Yosef, additional, Vähäsalo, Paula, additional, Varbanova, Boriana, additional, Vargova, Veronika, additional, Vesely, Richard, additional, Vijatov-Djuric, Gordana, additional, Vilaiyuk, Soamarat, additional, Vojinovic, Jelena, additional, Vougiouka, Olga, additional, Weiss, Pamela, additional, and Wouters, Carine, additional
Published: 2019
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36. Blau Syndrome-Associated Uveitis: Preliminary Results From an International Prospective Interventional Case Series

Author: Sarens, Inge L., Casteels, Ingele, Anton, Jordi, Bader-Meunier, Brigitte, Brissaud, Philippe, Chedeville, Gaelle, Cimaz, Rolando, Dick, Andrew D., Espada, Graciella, Fernandez-Martin, Jorge, Guly, Catherine M., Hachulla, Eric, Harjacek, Miroslav, Khubchandani, Raju, Mackensen, Friederike, Merino, Rosa, Modesto, Consuelo, Naranjo, Antonio, Oliveira-Knupp, Sheila, Ozen, Seza, Pajot, Christine, Ramanan, Athimalaipet V., Russo, Ricardo, Susic, Gordana, Thatayatikom, Akaluck, Thomee, Caroline, Vastert, Sebastiaan, Bertin, John, Arostegui, Juan I., Rose, Carlos D., Wouters, Carine H., Sarens, Inge L., Casteels, Ingele, Anton, Jordi, Bader-Meunier, Brigitte, Brissaud, Philippe, Chedeville, Gaelle, Cimaz, Rolando, Dick, Andrew D., Espada, Graciella, Fernandez-Martin, Jorge, Guly, Catherine M., Hachulla, Eric, Harjacek, Miroslav, Khubchandani, Raju, Mackensen, Friederike, Merino, Rosa, Modesto, Consuelo, Naranjo, Antonio, Oliveira-Knupp, Sheila, Ozen, Seza, Pajot, Christine, Ramanan, Athimalaipet V., Russo, Ricardo, Susic, Gordana, Thatayatikom, Akaluck, Thomee, Caroline, Vastert, Sebastiaan, Bertin, John, Arostegui, Juan I., Rose, Carlos D., and Wouters, Carine H.
Published: 2018

37. Blau Syndrome-Associated Uveitis: Preliminary Results From an International Prospective Interventional Case Series

Author: Immuno/reuma onderzoek 5 (Vastert2), Reumatologie patientenzorg, Child Health, Infection & Immunity, Sarens, Inge L., Casteels, Ingele, Anton, Jordi, Bader-Meunier, Brigitte, Brissaud, Philippe, Chedeville, Gaelle, Cimaz, Rolando, Dick, Andrew D., Espada, Graciella, Fernandez-Martin, Jorge, Guly, Catherine M., Hachulla, Eric, Harjacek, Miroslav, Khubchandani, Raju, Mackensen, Friederike, Merino, Rosa, Modesto, Consuelo, Naranjo, Antonio, Oliveira-Knupp, Sheila, Ozen, Seza, Pajot, Christine, Ramanan, Athimalaipet V., Russo, Ricardo, Susic, Gordana, Thatayatikom, Akaluck, Thomee, Caroline, Vastert, Sebastiaan, Bertin, John, Arostegui, Juan I., Rose, Carlos D., Wouters, Carine H., Immuno/reuma onderzoek 5 (Vastert2), Reumatologie patientenzorg, Child Health, Infection & Immunity, Sarens, Inge L., Casteels, Ingele, Anton, Jordi, Bader-Meunier, Brigitte, Brissaud, Philippe, Chedeville, Gaelle, Cimaz, Rolando, Dick, Andrew D., Espada, Graciella, Fernandez-Martin, Jorge, Guly, Catherine M., Hachulla, Eric, Harjacek, Miroslav, Khubchandani, Raju, Mackensen, Friederike, Merino, Rosa, Modesto, Consuelo, Naranjo, Antonio, Oliveira-Knupp, Sheila, Ozen, Seza, Pajot, Christine, Ramanan, Athimalaipet V., Russo, Ricardo, Susic, Gordana, Thatayatikom, Akaluck, Thomee, Caroline, Vastert, Sebastiaan, Bertin, John, Arostegui, Juan I., Rose, Carlos D., and Wouters, Carine H.
Published: 2018

38. Blau Syndrome–Associated Uveitis: Preliminary Results From an International Prospective Interventional Case Series

Author: Sarens, Inge L., primary, Casteels, Ingele, additional, Anton, Jordi, additional, Bader-Meunier, Brigitte, additional, Brissaud, Philippe, additional, Chédeville, Gaelle, additional, Cimaz, Rolando, additional, Dick, Andrew D., additional, Espada, Graciella, additional, Fernandez-Martin, Jorge, additional, Guly, Catherine M., additional, Hachulla, Eric, additional, Harjacek, Miroslav, additional, Khubchandani, Raju, additional, Mackensen, Friederike, additional, Merino, Rosa, additional, Modesto, Consuelo, additional, Naranjo, Antonio, additional, Oliveira-Knupp, Sheila, additional, Özen, Seza, additional, Pajot, Christine, additional, Ramanan, Athimalaipet V., additional, Russo, Ricardo, additional, Susic, Gordana, additional, Thatayatikom, Akaluck, additional, Thomée, Caroline, additional, Vastert, Sebastiaan, additional, Bertin, John, additional, Arostegui, Juan I., additional, Rose, Carlos D., additional, and Wouters, Carine H., additional
Published: 2018
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39. Phenotypic Variability and Disparities in Treatment and Outcomes of Childhood Arthritis Throughout the World: Results from the EPOCA Study

Author: Ravelli, Angelo, primary, Consolaro, Alessandro, additional, Giancane, Gabriella, additional, Alongi, Alessandra, additional, Pieter van Dijkhuizen, Evert Hendrik, additional, Aggarwal, Amita, additional, Al-Mayouf, Sulaiman M., additional, Bovis, Francesca, additional, De Inocencio, Jaime, additional, Demirkaya, Erkan, additional, Flato, Berit, additional, Foell, Dirk, additional, Maris Garay, Stella, additional, Lazăr, Călin, additional, Lovell, Daniel J., additional, Montobbio, Carolina, additional, Miettunen, Paivi, additional, Mihaylova, Dimitrina, additional, Nielsen, Susan, additional, Orban, Ilonka, additional, Rumba-Rozenfelde, Ingrida, additional, Saad Magalhaes, Claudia, additional, Shafaie, Nahid, additional, Susic, Gordana, additional, Trachana, Maria, additional, Wulffraat, Nico, additional, Pistorio, Angela, additional, Martini, Alberto, additional, Ruperto, Nicolino, additional, and Organisation (PRINTO), Paediatric Rheumatology Internation, additional
Published: 2018
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40. Bone mineral density in children with juvenile idiopathic arthritis after one year of treatment with etanercept

Author: Susic, Gordana, primary, Atanaskovic, Marija, additional, Stojanovic, Roksanda, additional, and Radunovic, Goran, additional
Published: 2018
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41. Predictors of Clinical Remission With Etanercept in Paediatric Patients With Extended Oligoarticular, Enthesitis-Related Arthritis and Psoriatic Arthritis : Findings From the CLIPPER Study

Author: Consolaro, Alessandro, Horneff, Gerd, Burgos-Vargas, Ruben, Foeldvari, Ivan, Vojinovic, J., Dehoorne, Joke, Panaviene, Violeta Vladislava, Susic, Gordana, Stanevica, V., Kobusinska, K., Zuber, Z., Mouy, R., Rumba-Rozenfelde, I., Dolezalova, Pavla, Job-Deslandre, Chantal, Wulffraat, NM, Pederson, R., Bukowski, J., Hinnershitz, T., Vlahos, B., Martini, A., and Ruperto, Nicolino
Published: 2016

42. Predictors of Clinical Remission With Etanercept in Paediatric Patients With Extended Oligoarticular, Enthesitis-Related Arthritis and Psoriatic Arthritis: Findings From the CLIPPER Study

Author: Infection & Immunity, Regenerative Medicine and Stem Cells, Child Health, Reumatologie onderzoek 2, Consolaro, Alessandro, Horneff, Gerd, Burgos-Vargas, Ruben, Foeldvari, Ivan, Vojinovic, J., Dehoorne, Joke, Panaviene, Violeta Vladislava, Susic, Gordana, Stanevica, V., Kobusinska, K., Zuber, Z., Mouy, R., Rumba-Rozenfelde, I., Dolezalova, Pavla, Job-Deslandre, Chantal, Wulffraat, NM, Pederson, R., Bukowski, J., Hinnershitz, T., Vlahos, B., Martini, A., Ruperto, Nicolino, Infection & Immunity, Regenerative Medicine and Stem Cells, Child Health, Reumatologie onderzoek 2, Consolaro, Alessandro, Horneff, Gerd, Burgos-Vargas, Ruben, Foeldvari, Ivan, Vojinovic, J., Dehoorne, Joke, Panaviene, Violeta Vladislava, Susic, Gordana, Stanevica, V., Kobusinska, K., Zuber, Z., Mouy, R., Rumba-Rozenfelde, I., Dolezalova, Pavla, Job-Deslandre, Chantal, Wulffraat, NM, Pederson, R., Bukowski, J., Hinnershitz, T., Vlahos, B., Martini, A., and Ruperto, Nicolino
Published: 2016

43. Performance of Current Guidelines for Diagnosis of Macrophage Activation Syndrome Complicating Systemic Juvenile Idiopathic Arthritis

Author: Davi, Sergio Minoia, Francesca Pistorio, Angela Horne, AnnaCarin Consolaro, Alessandro Rosina, Silvia Bovis, Francesca Cimaz, Rolando Gamir, Maria Luz Ilowite, Norman T. and Kone-Paut, Isabelle Feitosa de Oliveira, Sheila Knupp and McCurdy, Deborah Silva, Clovis Artur Sztajnbok, Flavio and Tsitsami, Elena Unsal, Erbil Weiss, Jennifer E. Wulffraat, Nico Abinun, Mario Aggarwal, Amita Apaz, Maria Teresa and Astigarraga, Itziar Corona, Fabrizia Cuttica, Ruben and D'Angelo, Gianfranco Eisenstein, Eli M. Hashad, Soad Lepore, Loredana Mulaosmanovic, Velma Nielsen, Susan Prahalad, Sampath Rigante, Donato Stanevicha, Valda Sterba, Gary and Susic, Gordana Takei, Syuji Trauzeddel, Ralf Zletni, Mabruka and Ruperto, Nicolino Martini, Alberto Cron, Randy Q. and Ravelli, Angelo Paediat Rheumatology Int Trials Or Childhood Arthritis Rheumatology R Pediat Rheumatology Collaborative and Histiocyte Soc
Subjects: body regions, musculoskeletal diseases, fungi, lipids (amino acids, peptides, and proteins), hormones, hormone substitutes, and hormone antagonists
Abstract: ObjectiveTo compare the capacity of the 2004 diagnostic guidelines for hemophagocytic lymphohistiocytosis (HLH-2004) with the capacity of the preliminary diagnostic guidelines for systemic juvenile idiopathic arthritis (JIA)-associated macrophage activation syndrome (MAS) to discriminate MAS complicating systemic JIA from 2 potentially confusable conditions, represented by active systemic JIA without MAS and systemic infection. MethodsInternational pediatric rheumatologists and hemato-oncologists were asked to retrospectively collect clinical information from patients with systemic JIA-associated MAS and confusable conditions. The ability of the guidelines to differentiate MAS from the control diseases was evaluated by calculating the sensitivity and specificity of each set of guidelines and the kappa statistics for concordance with the physician’s diagnosis. Owing to the fact that not all patients were assessed for hemophagocytosis on bone marrow aspirates and given the lack of data on natural killer cell activity and soluble CD25 levels, the HLH-2004 guidelines were adapted to enable the diagnosis of MAS when 3 of 5 of the remaining items (3/5-adapted) or 4 of 5 of the remaining items (4/5-adapted) were present. ResultsThe study sample included 362 patients with systemic JIA and MAS, 404 patients with active systemic JIA without MAS, and 345 patients with systemic infection. The best capacity to differentiate MAS from systemic JIA without MAS was found when the preliminary MAS guidelines were applied. The 3/5-adapted HLH-2004 guidelines performed better than the 4/5-adapted guidelines in distinguishing MAS from active systemic JIA without MAS. The 3/5-adapted HLH-2004 guidelines and the preliminary MAS guidelines with the addition of ferritin levels 500 ng/ml discriminated best between MAS and systemic infections. ConclusionThe preliminary MAS guidelines showed the strongest ability to identify MAS in systemic JIA. The addition of hyperferritinemia enhanced their capacity to differentiate MAS from systemic infections. The HLH-2004 guidelines are likely not appropriate for identification of MAS in children with systemic JIA.
Published: 2014

44. Health Related Quality Of Life Measure In Systemic Pediatric Rheumatic Diseases And Its Translation To Different Languages: An International Collaboration

Author: Members of our collaborative group, Moorthy, Lakshmi Nandini, Roy, Elizabeth, Kurra, Vamsi, Peterson, Margaret GE, Hassett, Afton L, Lehman, Thomas JA, Scott, Christiaan, El-Ghoneimy, Dalia, Saad, Shereen, El Feky, Reem, Al-Mayouf, Sulaiman, Dolezalova, Pavla, Malcova, Hana, Herlin, Troels, Nielsen, Susan, Wulffraat, Nico, van Royen, Annet, Marks, Stephen D, Belot, Alexandre, Brunner, Jurgen, Huemer, Christian, Foeldvari, Ivan, Horneff, Gerd, Saurenman, Traudel, Schroeder, Silke, Pratsidou-Gertsi, Polyxeni, Trachana, Maria, Uziel, Yosef, Aggarwal, Amita, Constantin, Tamas, Cimaz, Rolando, Giani, Theresa, Cantarini, Luca, Falcini, Fernanda, Manzoni, Silvia Magni, Ravelli, Angelo, Rigante, Donato, Zulian, Fracnceso, Miyamae, Takako, Yokota, Shumpei, Sato, Juliana, Magalhaes, Claudia S, Len, Claudio A, Appenzeller, Simone, Knupp, Sheila Oliveira, Rodrigues, Marta Cristine, Sztajnbok, Flavio, de Almeida, Rozana Gasparello, de Jesus, Adriana Almeida, de Arruda Campos, Lucia Maria, Silva, Clovis, Lazar, Calin, Susic, Gordana, Avcin, Tadej, Cuttica, Ruben, Burgos-Vargas, Ruben, Faugier, Enrique, Anton, Jordi, Modesto, Consuelo, Vazquez, Liza, Barillas, Lilliana, Barinstein, Laura, Sterba, Gary, Maldonado, Irama, Ozen, Seza, Kasapcopur, Ozgur, Demirkaya, Erkan, Benseler, Susa, Çocuk Sağlığı ve Hastalıkları, Rutgers State Univ, Hosp Special Surg, Univ Michigan, Red Cross War Mem Childrens Hosp, Ain Shams Univ, King Faisal Specialist Hosp & Res Ctr, Charles Univ Prague, Gen Univ Hosp, Univ Hosp Motol, Aarhus Univ, Rigshosp, Univ Med Ctr, Wilhelmina Childrens Hosp, Great Ormond St Hosp Sick Children, Lyon Univ, Med Univ Innsbruck, Prim Univ Doz, Hamburg Ctr Pediat & Adolescence Rheumatol, Asklepios Clin Sankt, Univ Zurich, Aristotle Univ Thessaloniki, Israel Meir Hosp, Sanjay Gandhi Postgrad Inst Med Sci, Semmelweis Univ, Anna Meyer Hosp, Univ Siena, Univ Florence, Osped Pediat Bambino Gesu, Univ Genoa Pediat II Reumatol, Univ Cattolica Sacro Cuore, Univ Padua, Yokohama City Univ, Universidade Estadual Paulista (Unesp), Universidade Federal de São Paulo (UNIFESP), Universidade Estadual de Campinas (UNICAMP), Universidade Federal do Rio de Janeiro (UFRJ), Univ Estado do, Universidade de São Paulo (USP), Childrens Inst, Clin Pediat I, Inst Rheumatol, Univ Childrens Hosp, Head Rheumatol Hosp Pedro Elizalde, Hosp Gen Mexico City, Hosp Infantil Mexico Fed Gomez, Hosp San Juan Dios, Hosp Univ Valle Hebron, Mt Sinai Med Ctr, Complejo Hosp Univ Ruiz & Paez, Hacettepe Univ, Istanbul Univ, FMF Arthrit Vasculitis & Orphan Dis Res Ctr, Univ Calgary, and Universitat de Barcelona
Subjects: Male, Research design, Pediatrics, Settore MED/16 - REUMATOLOGIA, Turkish, International Cooperation, German, Quality of life, immune system diseases, Surveys and Questionnaires, Immunology and Allergy, Pediatric rheumatology, Child, skin and connective tissue diseases, Language, Inflamació, humanities, Treatment Outcome, Qualitat de vida, Research Design, Child, Preschool, Antirheumatic Agents, language, Female, Immunosuppressive Agents, geographic locations, medicine.medical_specialty, Adolescent, Psychometrics, Short Report, Danish, Rheumatology, Feasibility Studies, Humans, Quality of Life, Rheumatic Diseases, Translating, medicine, Pediatrics, Perinatology, and Child Health, Reumatologia pediàtrica, Preschool, Inflammation, Lupus erythematosus, business.industry, medicine.disease, language.human_language, Family medicine, Pediatrics, Perinatology and Child Health, Xhosa, Portuguese, business
Abstract: Made available in DSpace on 2015-03-18T15:55:50Z (GMT). No. of bitstreams: 0 Previous issue date: 2014-11-25Bitstream added on 2015-03-18T16:28:34Z : No. of bitstreams: 1 WOS000346520700001.pdf: 205186 bytes, checksum: c29e39dcb1d87ab0b78ebf2affc7a14b (MD5) Background: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases.Findings: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY (c)) to Simple Measure of Impact of Illness in Youngsters (SMILY (c)-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY (c)-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n= 15) and 17 parents participated. The mean age was 12 +/- 4 years, with median disease duration of 21 months (1-172 months). We translated SMILY (c)-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.Conclusion: SMILY (c)-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY (c)-Illness with its available translations may be used as useful adjuncts to clinical practice and research. Rutgers State Univ, Robert Wood Johnson Med Sch, New Brunswick, NJ 08903 USA Rutgers State Univ, Child Hlth Inst New Jersey, New Brunswick, NJ 08901 USA Hosp Special Surg, New York, NY 10021 USA Univ Michigan, Ann Arbor, MI 48109 USA Red Cross War Mem Childrens Hosp, Cape Town, South Africa Ain Shams Univ, Pediat Allergy Immunol & Rheumatol Unit, Cairo, Egypt Ain Shams Univ, Pediat Rheumatol Pediat Allergy Immunol & Rheum, Cairo, Egypt King Faisal Specialist Hosp & Res Ctr, Riyadh 11211, Saudi Arabia Charles Univ Prague, Prague, Czech Republic Gen Univ Hosp, Prague, Czech Republic Univ Hosp Motol, Dept Pediat, Prague, Czech Republic Aarhus Univ, Hosp Skejby, Aarhus, Denmark Rigshosp, Juliane Marie Ctr, DK-2100 Copenhagen, Denmark Univ Med Ctr, Dept Pediat Immunol, Utrecht, Netherlands Wilhelmina Childrens Hosp, Utrecht, Netherlands Great Ormond St Hosp Sick Children, Children NHS Fdn Trust, Renal Unit, London, England Lyon Univ, Hosp Civils Lyon, Rheumatol & Dermatol Dept, Lyon, France Med Univ Innsbruck, A-6020 Innsbruck, Austria Prim Univ Doz, Bregenz, Austria Hamburg Ctr Pediat & Adolescence Rheumatol, Hamburg, Germany Asklepios Clin Sankt, Augustin, Germany Univ Zurich, Childrens Hosp, Zurich, Switzerland Aristotle Univ Thessaloniki, Pediat Immunol & Rheumatol Referral Ctr, GR-54006 Thessaloniki, Greece Israel Meir Hosp, Kefar Sava, Israel Sanjay Gandhi Postgrad Inst Med Sci, Lucknow, Uttar Pradesh, India Semmelweis Univ, H-1085 Budapest, Hungary Anna Meyer Hosp, Florence, Italy Univ Siena, Res Ctr System Autoimmune & Autoinflammatory Dis, I-53100 Siena, Italy Univ Florence, Florence, Italy Osped Pediat Bambino Gesu, IRCCS, Pediat Rheumatol Unit, Rome, Italy Univ Genoa Pediat II Reumatol, Ist G Gaslini EULAR, Ctr Excellence Rheumatol, Genoa, Italy Univ Cattolica Sacro Cuore, Inst Pediat, Rome, Italy Univ Padua, Dept Pediat, Pediat Rheumatol Unit, Padua, Italy Yokohama City Univ, Sch Med, Yokohama, Kanagawa 232, Japan Univ Estadual Paulista, UNESP, Botucatu, SP, Brazil Univ Fed Sao Paulo, Dept Pediat, Sao Paulo, Brazil Univ Estadual Campinas, Dept Med, Campinas, SP, Brazil Univ Fed Rio de Janeiro, Dept Pediat, Rio De Janeiro, Brazil Univ Estado do, Adolescent Hlth Care Unit, Div Pediat Rheumatol, Rio De Janeiro, Brazil Univ Sao Paulo, Fac Med, Childrens Inst, Dept Pediat,Pediat Rheumatol Unit, Sao Paulo, Brazil Childrens Inst, Pediat Rheumatol Unit, Sao Paulo, Brazil Clin Pediat I, Cluj Napoca, Romania Inst Rheumatol, Belgrade, Serbia Univ Childrens Hosp, Univ Med Ctr Ljubljana, Ljubljana, Slovenia Head Rheumatol Hosp Pedro Elizalde, Buenos Aires, DF, Argentina Hosp Gen Mexico City, Mexico City, DF, Mexico Hosp Infantil Mexico Fed Gomez, Mexico City, DF, Mexico Hosp San Juan Dios, Barcelona, Spain Hosp Univ Valle Hebron, Barcelona, Spain Mt Sinai Med Ctr, New York, NY 10029 USA Mt Sinai Med Ctr, Miami Beach, FL 33140 USA Complejo Hosp Univ Ruiz & Paez, Bolivar, Venezuela Hacettepe Univ, Dept Pediat, Ankara, Turkey Istanbul Univ, Cerrahpasa Med Sch, Istanbul, Turkey FMF Arthrit Vasculitis & Orphan Dis Res Ctr, Inst Hlth Sci, Ankara, Turkey Univ Calgary, Dept Pediat, Alberta Childrens Hosp, Res Inst, Calgary, AB T2N 1N4, Canada Univ Estadual Paulista, UNESP, Botucatu, SP, Brazil
Published: 2014

45. Measuring Disease Damage and Its Severity in Childhood-Onset Systemic Lupus Erythematosus.

Author: Holland, Michael J., Beresford, Michael W., Feldman, Brian M., Huggins, Jennifer, Norambuena, Ximena, Silva, Clovis A., Susic, Gordana, Sztajnbok, Flavio, Uziel, Yosef, Appenzeller, Simone, Ardoin, Stacy P., Avcin, Tadej, Flores, Francisco, Goilav, Beatrice, Khubchandani, Raju, Klein‐Gitelman, Marissa, Levy, Deborah, Ravelli, Angelo, Wenderfer, Scott E., and Ying, Jun
Abstract: Objective: To describe the frequency and types of disease damage occurring with childhood-onset systemic lupus erythematosus (SLE) as measured by the 41-item Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI), and to assess the SDI's ability to reflect damage severity.Methods: Information for the SDI was prospectively collected from 1,048 childhood-onset SLE patients. For a subset of 559 patients, physician-rated damage severity measured by visual analog scale (MD VAS damage) was also available. Frequency of SDI items and the association between SDI summary scores and MD VAS damage were estimated. Finally, an international consensus conference, using nominal group technique, considered the SDI's capture of childhood-onset SLE-associated damage and its severity.Results: After a mean disease duration of 3.8 years, 44.2% of patients (463 of 1,048) already had an SDI summary score >0 (maximum 14). The most common SDI items scored were proteinuria, scarring alopecia, and cognitive impairment. Although there was a moderately strong association between SDI summary scores and MD VAS damage (Spearman's r = 0.49, P < 0.0001) in patients with damage (SDI summary score >0), mixed-effects analysis showed that only 4 SDI items, each occurring in <2% of patients overall, were significantly associated with MD VAS damage. There was consensus among childhood-onset SLE experts that the SDI in its current form is inadequate for estimating the severity of childhood-onset SLE-associated damage.Conclusion: Disease damage as measured by the SDI is common in childhood-onset SLE, even with relatively short disease durations. Given the shortcomings of the SDI, there is a need to develop new tools to estimate the impact of childhood-onset SLE-associated damage. [ABSTRACT FROM AUTHOR]
Published: 2018
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46. Health-related quality of life, anxiety, and depressive symptoms in children with primary immunodeficiencies

Author: Kuburovic,Nina B, Pasic,Srdjan, Susic,Gordana, Stevanovic,Dejan, Kuburovic,Vladimir, Zdravkovic,Slavisa, Petrovic,Mirjana Janicijevic, Pekmezovic,Tatjana, Kuburovic,Nina B, Pasic,Srdjan, Susic,Gordana, Stevanovic,Dejan, Kuburovic,Vladimir, Zdravkovic,Slavisa, Petrovic,Mirjana Janicijevic, and Pekmezovic,Tatjana
Abstract: Nina B Kuburovic,1 Srdjan Pasic,2 Gordana Susic,3 Dejan Stevanovic,4 Vladimir Kuburovic,5 Slavisa Zdravkovic,6 Mirjana Janicijevic Petrovic,7 Tatjana Pekmezovic8 1Department of Public Health, Mother and Child Health Care Institute of Serbia, 2Department of Immunology, Pediatric Clinic, Faculty of Medicine, University of Belgrade, 3Institute for Rheumatology, Clinical Center of Serbia, 4Clinic for Neurology and Psychiatry for Children and Adolescents, 5Pediatric Clinic, Mother and Child Health Care Institute of Serbia, 6Pediatric Day Hospital, Mother and Child Health Care Institute of Serbia, Belgrade, 7Faculty of Medical Sciences, University of Kragujevac, Kragujevac, 8Serbia Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia Introduction: The aims of this study were to evaluate levels of health-related quality of life (HRQOL) and the presence of anxiety and depressive symptoms in children with primary immunodeficiency disease (PID) in Serbia. Materials and methods: Self- and parent-rated data from 25 children with PID were available. As controls, data from 50 children with juvenile idiopathic arthritis (JIA) and 89 healthy children were included. The Pediatric Quality of Life Inventory was used for HRQOL assessments. Anxiety symptoms were identified using the Screen for Child Anxiety-Related Emotional Disorders questionnaire, while depressive symptoms were identified using the Mood and Feeling Questionnaire. Results: Children with PID had significantly lower Pediatric Quality of Life Inventory total scores compared to children with JIA and healthy children as child-rated (P=0.02) and parent-rated (P<0.001). Specifically, they had significantly lowered emotional functioning compared to children with JIA, and social functioning compared to both children with JIA and healthy children. School functioning was significantly lower among children with PID (parent-rated only). By parent-rated responses, six (24%) out of 25 childr
Published: 2014

47. The Ped-APS registry: The antiphospholipid syndrome in childhood

Author: Campos, Lucia M., Ozisik, Kanat, Gozdasoglu, Sevgi, Rodriguez, Vilmarie, Butani, Lavjay, Susic, Gordana, Buyukgebiz, Atilla, Falcini, Fernanda, Zulian, Francesco, Rigante, Donato, Gattorno, Marco, Kenet, Gili, Revel-Vilk, Shoshana, Mukamel, Masha, Harel, Liora, Uziel, Yosef, Barash, Judith, Padeh, Shai, Berkun, Yackov, Dressler, Frank, Pruunsild, Chris, Nielsen, Susan, Silverman, Earl D., de Oliveira, Sheila Knupp Feitosa, Saad-Magalhaes, Claudia, Silva, Clovis A., Sztajnbok, Flavio R., Garay, Stella, Meroni, Pier Luigi, Martini, Alberto, Ravelli, Angelo, Cervera, Ricard, Rozman, B., Kuzmanovska, Dafina B., Cimaz, R., and Avčin, Tadej
Subjects: Pediatrics, medicine.medical_specialty, Clinical immunology, business.industry, Antiphospholipid antibodies, Paediatrics, Thrombosis, medicine.disease, Vein thrombosis, Settore MED/38 - PEDIATRIA GENERALE E SPECIALISTICA, Rheumatology, immune system diseases, Antiphospholipid syndrome, Antiphospholipid Syndrome, Child, Humans, Registries, Phospholipid antibody, Medicine, University medical, business
Abstract: In recent years, antiphospholipid syndrome (APS) has been increasingly recognised in various paediatric autoimmune and nonautoimmune diseases, but the relatively low prevalence and heterogeneity of APS in childhood made it very difficult to study in a systematic way. The project of an international registry of paediatric patients with APS (the Ped-APS Registry) was initiated in 2004 to foster and conduct multicentre, controlled studies with large number of paediatric APS patients. The Ped-APS Registry is organised as a collaborative project of the European Forum on Antiphospholipid Antibodies and Juvenile Systemic Lupus Erythematosus Working Group of the Paediatric Rheumatology European Society. Currently, it documents a standardised clinical, laboratory and therapeutic data of 133 children with antiphospholipid antibodies (aPL)-related thrombosis from 14 countries. The priority projects for future research of the Ped-APS Registry include prospective enrolment of new patients with aPL-related thrombosis, assessment of differences between the paediatric and adult APS, evaluation of proinflammatory genotype as a risk factor for APS manifestations in childhood and evaluation of patients with isolated nonthrombotic aPL-related manifestations. © The Author(s), 2009.
Published: 2009

48. Inflence of clinical and genetic characteristics on ability to achive and maintain remission in JIA patients on etanercept treatment

Author: Lazarevic, Dragana S, primary, Vojinovic, Jelena, additional, Susic, Gordana, additional, and Basic, Jelena, additional
Published: 2014
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49. Health-related quality of life, anxiety, and depressive symptoms in children with primary immunodeficiencies

Author: Kuburovic, Nina, primary, Pasic, Srdjan, additional, Susic, Gordana, additional, Stevanovic, Dejan, additional, Kuburovic, Vladimir, additional, Zdravkovic, Slavisa, additional, Pekmezovic, Tatjana, additional, and Petrovic, Mirjana Janicijevic, additional
Published: 2014
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50. Juvenile Sjögren’s syndrome: Case report

Author: Susic, Gordana, primary, Stojanovic, Roksanda, additional, Milic, Vera, additional, Boricic, Ivan, additional, Mandic, Bojan, additional, and Milenkovic, Svetislav, additional
Published: 2013
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