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1. 2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases.

Author

Dures, Emma, Farisoğulları, Bayram, Ferreira Santos, Eduardo José, Molto, Anna, Feldthusen, Caroline, Harris, Claire, Elling-Audersch, Corinna, Connolly, Deirdre, Elefante, Elena, Estévez-López, Fernando, Bini, Ilaria, Primdahl, Jette, Hoeper, Kirsten, Urban, Marie, van de Laar, Mart A. F. J., Redondo, Marta, Böhm, Peter, Amarnani, Raj, Hayward, Rhys, and Geenen, Rinie

Published
2024
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2. 2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases

Author

Dures, Emma, primary, Farisoğulları, Bayram, additional, Santos, Eduardo José Ferreira, additional, Molto, Anna, additional, Feldthusen, Caroline, additional, Harris, Claire, additional, Elling-Audersch, Corinna, additional, Connolly, Deirdre, additional, Elefante, Elena, additional, Estévez-López, Fernando, additional, Bini, Ilaria, additional, Primdahl, Jette, additional, Hoeper, Kirsten, additional, Urban, Marie, additional, van de Laar, Mart A F J, additional, Redondo, Marta, additional, Böhm, Peter, additional, Amarnani, Raj, additional, Hayward, Rhys, additional, Geenen, Rinie, additional, Rednic, Simona, additional, Pettersson, Susanne, additional, Thomsen, Tanja, additional, Uhlig, Till, additional, Ritschl, Valentin, additional, and Machado, Pedro M, additional

Published
2023
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3. Global comment on the use of hydroxychloroquine during the periconception period and pregnancy in women with autoimmune diseases

Author

Schreiber, Karen, primary, Giles, Ian, additional, Costedoat-Chalumeau, Nathalie, additional, Nelson-Piercy, Catherine, additional, Dolhain, Radboud JEM, additional, Mosca, Marta, additional, Förger, Frauke, additional, Fischer-Betz, Rebecca, additional, Molto, Anna, additional, Tincani, Angela, additional, Pasquier, Elisabeth, additional, Marin, Benoit, additional, Elefant, Elisabeth, additional, Salmon, Jane, additional, Bermas, Bonnie L, additional, Sammaritano, Lisa, additional, Clowse, Megan E B, additional, Chambers, Christina, additional, Buyon, Jill, additional, Inoue, Saori Abe, additional, Agmon-Levin, Nancy, additional, Aguilera, Silvia, additional, Emadi, Samar Al, additional, Andersen, Jeanette, additional, Andrade, Danieli, additional, Antovic, Aleksandra, additional, Arnaud, Laurent, additional, Christiansen, Alice Ashouri, additional, Avcin, Tadej, additional, Badreh-Wirström, Sara, additional, Bertsias, George, additional, Bini, Ilaria, additional, Bobirca, Anca, additional, Branch, Ware, additional, Brucato, Antonio, additional, Bultink, Irene, additional, Capela, Susanna, additional, Cecchi, Irene, additional, Cervera, Ricard, additional, Chighizola, Cecilia, additional, Cobilinschi, Claudia, additional, Cuadrado, Maria Jose, additional, Dey, Dzifa, additional, Etomi, Oseme, additional, Espinosa, Gerard, additional, Flint, Julia, additional, Fonseca, João-Eurico, additional, Fritsch-Stork, Ruth, additional, Gerosa, Maria, additional, Glintborg, Bente, additional, Skorpen, Carina Gøtestam, additional, Goulden, Bethan, additional, Graversgaard, Christine, additional, Gunnarsson, Iva, additional, Gupta, Latika, additional, Hetland, Merete, additional, Hodson, Ken, additional, Hunt, Beverley J, additional, Isenberg, David, additional, Jacobsen, Søren, additional, Khamashta, Munther, additional, Levy, Roger, additional, Linde, Louise, additional, Lykke, Jacob, additional, Meissner, Yvette, additional, Moore, Louise, additional, Morand, Eric, additional, Navarra, Sandra, additional, Opris-Belinski, Daniela, additional, Østensen, Monika, additional, Ozawa, Hiroki, additional, Perez-Garcia, Luis Fernando, additional, Petri, Michelle, additional, Pons-Estel, Guillermo J, additional, Radin, Massimo, additional, Raio, Luigi, additional, Rottenstreich, Amihai, additional, Ruiz-Irastorza, Guillermo, additional, Tunjić, Slađana Rumpl, additional, Rygg, Marite, additional, Sciascia, Savino, additional, Strangfeld, Anja, additional, Svenungsson, Elisabet, additional, Tektonidou, Maria, additional, Troldborg, Anne, additional, Vinet, Evelyne, additional, Vojinovic, Jelena, additional, Voss, Anne, additional, Wallenius, Marianne, additional, and Andreoli, Laura, additional

Published
2023
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5. Global comment on the use of hydroxychloroquine during the periconception period and pregnancy in women with autoimmune diseases

Author

Schreiber, Karen, Giles, Ian, Costedoat-Chalumeau, Nathalie, Nelson-Piercy, Catherine, Dolhain, Radboud Jem, Mosca, Marta, Förger, Frauke, Fischer-Betz, Rebecca, Molto, Anna, Tincani, Angela, Pasquier, Elisabeth, Marin, Benoit, Elefant, Elisabeth, Salmon, Jane, Bermas, Bonnie L, Sammaritano, Lisa, Clowse, Megan E B, Chambers, Christina, Buyon, Jill, Inoue, Saori Abe, Agmon-Levin, Nancy, Aguilera, Silvia, Emadi, Samar Al, Andersen, Jeanette, Andrade, Danieli, Antovic, Aleksandra, Arnaud, Laurent, Christiansen, Alice Ashouri, Avcin, Tadej, Badreh-Wirström, Sara, Bertsias, George, Bini, Ilaria, Bobirca, Anca, Branch, Ware, Brucato, Antonio, Bultink, Irene, Capela, Susanna, Cecchi, Irene, Cervera, Ricard, Chighizola, Cecilia, Cobilinschi, Claudia, Cuadrado, Maria Jose, Dey, Dzifa, Etomi, Oseme, Espinosa, Gerard, Flint, Julia, Fonseca, João-Eurico, Fritsch-Stork, Ruth, Gerosa, Maria, Glintborg, Bente, Skorpen, Carina Gøtestam, Goulden, Bethan, Graversgaard, Christine, Gunnarsson, Iva, Gupta, Latika, Hetland, Merete, Hodson, Ken, Hunt, Beverley J, Isenberg, David, Jacobsen, Søren, Khamashta, Munther, Levy, Roger, Linde, Louise, Lykke, Jacob, Meissner, Yvette, Moore, Louise, Morand, Eric, Navarra, Sandra, Opris-Belinski, Daniela, Østensen, Monika, Ozawa, Hiroki, Perez-Garcia, Luis Fernando, Petri, Michelle, Pons-Estel, Guillermo J, Radin, Massimo, Raio, Luigi, Rottenstreich, Amihai, Ruiz-Irastorza, Guillermo, Tunjić, Slađana Rumpl, Rygg, Marite, Sciascia, Savino, Strangfeld, Anja, Svenungsson, Elisabet, Tektonidou, Maria, Troldborg, Anne, Vinet, Evelyne, Vojinovic, Jelena, Voss, Anne, Wallenius, Marianne, Andreoli, Laura, Schreiber, Karen, Giles, Ian, Costedoat-Chalumeau, Nathalie, Nelson-Piercy, Catherine, Dolhain, Radboud Jem, Mosca, Marta, Förger, Frauke, Fischer-Betz, Rebecca, Molto, Anna, Tincani, Angela, Pasquier, Elisabeth, Marin, Benoit, Elefant, Elisabeth, Salmon, Jane, Bermas, Bonnie L, Sammaritano, Lisa, Clowse, Megan E B, Chambers, Christina, Buyon, Jill, Inoue, Saori Abe, Agmon-Levin, Nancy, Aguilera, Silvia, Emadi, Samar Al, Andersen, Jeanette, Andrade, Danieli, Antovic, Aleksandra, Arnaud, Laurent, Christiansen, Alice Ashouri, Avcin, Tadej, Badreh-Wirström, Sara, Bertsias, George, Bini, Ilaria, Bobirca, Anca, Branch, Ware, Brucato, Antonio, Bultink, Irene, Capela, Susanna, Cecchi, Irene, Cervera, Ricard, Chighizola, Cecilia, Cobilinschi, Claudia, Cuadrado, Maria Jose, Dey, Dzifa, Etomi, Oseme, Espinosa, Gerard, Flint, Julia, Fonseca, João-Eurico, Fritsch-Stork, Ruth, Gerosa, Maria, Glintborg, Bente, Skorpen, Carina Gøtestam, Goulden, Bethan, Graversgaard, Christine, Gunnarsson, Iva, Gupta, Latika, Hetland, Merete, Hodson, Ken, Hunt, Beverley J, Isenberg, David, Jacobsen, Søren, Khamashta, Munther, Levy, Roger, Linde, Louise, Lykke, Jacob, Meissner, Yvette, Moore, Louise, Morand, Eric, Navarra, Sandra, Opris-Belinski, Daniela, Østensen, Monika, Ozawa, Hiroki, Perez-Garcia, Luis Fernando, Petri, Michelle, Pons-Estel, Guillermo J, Radin, Massimo, Raio, Luigi, Rottenstreich, Amihai, Ruiz-Irastorza, Guillermo, Tunjić, Slađana Rumpl, Rygg, Marite, Sciascia, Savino, Strangfeld, Anja, Svenungsson, Elisabet, Tektonidou, Maria, Troldborg, Anne, Vinet, Evelyne, Vojinovic, Jelena, Voss, Anne, Wallenius, Marianne, and Andreoli, Laura

Published
2023

7. EULAR points to consider for including the perspective of young patients with inflammatory arthritis into patient-reported outcomes measures

Author

Studenic, Paul, primary, Stamm, Tanja A, additional, Mosor, Erika, additional, Bini, Ilaria, additional, Caeyers, Nele, additional, Gossec, Laure, additional, Kouloumas, Marios, additional, Nikiphorou, Elena, additional, Olsder, Wendy, additional, Padjen, Ivan, additional, Ramiro, Sofia, additional, Stones, Simon, additional, Wilhelmer, Tanita-Christina, additional, and Alunno, Alessia, additional

Published
2022
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8. EULAR points to consider for including the perspective of young patients with inflammatory arthritis into patient-reported outcomes measures

Author

Studenic, Paul, Stamm, Tanja A, Mosor, Erika, Bini, Ilaria, Caeyers, Nele, Kouloumas, Marios, Nikiphorou, Elena, Olsder, Wendy, Padjen, Ivan, Ramiro, Sofia, Stones, Simon, Wilhelmer, Tanita-Christina, Alunno, Alessia, Studenic, Paul, Stamm, Tanja A, Mosor, Erika, Bini, Ilaria, Caeyers, Nele, Kouloumas, Marios, Nikiphorou, Elena, Olsder, Wendy, Padjen, Ivan, Ramiro, Sofia, Stones, Simon, Wilhelmer, Tanita-Christina, and Alunno, Alessia

Published
2022

10. Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force

Author

Mosor, Erika, primary, Studenic, Paul, additional, Alunno, Alessia, additional, Padjen, Ivan, additional, Olsder, Wendy, additional, Ramiro, Sofia, additional, Bini, Ilaria, additional, Caeyers, Nele, additional, Gossec, Laure, additional, Kouloumas, Marios, additional, Nikiphorou, Elena, additional, Stones, Simon, additional, Wilhelmer, Tanita-Christina, additional, and Stamm, Tanja A, additional

Published
2021
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11. 'WHEN YOU READ THIS, YOU REALLY FEEL OLD!' PERSPECTIVES OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES FROM A EUROPEAN QUALITATIVE STUDY

Author

Mosor, Erika, Studenic, Paul, Alunno, Alessia, Padjen, Ivan, Olsder, Wendy, Ramiro Sofia, Bini, Ilaria, Caeyers, Naele, Gossec, Laure, Kouloumas, Marios, Nikiphorou, Elena, Stones, Simon, and Wilhelmer, Tanita-Christina

Subjects
rheumatic disease, patient-reported outcomes
Abstract

Background Although patient-reported outcome measures (PROMs) are extensively used in clinical practice and research, it is unclear whether the most commonly used instruments adequately cover the perspective of young people with chronic inflammatory arthritis. Objectives To investigate whether the aspects important to young people with inflammatory arthritis are sufficiently covered by the PROMs that are widely used in clinical practice and research. Methods A qualitative, multicentre focus group interview study was conducted in Austria, Croatia, Italy and the Netherlands in order to inform a EULAR-funded taskforce. Three groups of young people (aged 18-35 years) with either (1) rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) and Still’s disease, (2) psoriatic arthritis (PsA), or (3) axial spondyloarthritis (SpA) were interviewed at each centre. The interview guide was based on the WHO International Classification of Functioning, Disability and Health (ICF) to comprehensively cover all aspects of functioning in daily life. It also included questions on the perspectives and views of the participants on selected PROMs (Pain scales, Patient Global Assessment [PGA], FACIT Fatigue Scale, The Health Assessment Questionnaire [HAQ]/Bath Ankylosing Spondylitis Functional Index [BASFI], and The 36-Item Short Form Health Survey [SF-36]). All interviews were conducted by trained local investigators, audio-recorded, transcribed verbatim, and analysed using a modified form of ‘meaning condensation’. During a face-to-face meeting of the task-force members, the concepts were reformulated and organized into a scheme of higher and lower-level concepts. Results Thematic saturation was reached after 12 focus groups with 53 participants (21 with RA/JIA/Still’s, 15 with SpA, 17 with PsA ; 72% female, mean age 28, SD±5), resulting in 18 hours and 22 minutes of recorded time and 269 pages of transcript. The analysis revealed aspects of functioning in daily life important to young people with inflammatory arthritis which were mentioned in all countries. Furthermore, 55 concepts emerged with regard to PROMs and were summarized into seven higher-level concepts. The table depicts these higher-level concepts including quotes from the interviews. Conclusion The evaluation of young patients’ perspectives should probably reach beyond the topics/aspects covered in the most commonly used PROMs. Accordingly, tailoring the assessments to specific needs of young people should be considered.

Published
2019

12. SAT0668 “WHEN YOU READ THIS, YOU REALLY FEEL OLD!” PERSPECTIVES OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES FROM A EUROPEAN QUALITATIVE STUDY

Author

Mosor, Erika, primary, Studenic, Paul, additional, Alunno, Alessia, additional, Padjen, Ivan, additional, Olsder, Wendy, additional, Ramiro, Sofia, additional, Bini, Ilaria, additional, Caeyers, Nele, additional, Gossec, Laure, additional, Kouloumas, Marios, additional, Nikiphorou, Elena, additional, Stones, Simon, additional, Wilhelmer, Tanita-Christina, additional, and Stamm, Tanja, additional

Published
2019
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14. MRI and 18F-FDG-PET/CT in a rare case of early (precursor) B-lymphoblastic leukaemia with bone involvement as initial manifestation.

Author

Cistaro, Angelina, La Delfa, Vincenzo, Bini, Ilaria, Di Rosa, Gianpaolo, Cogoni, Maurizio, and Quartuccio, Natale

Subjects
CHRONIC lymphocytic leukemia diagnosis, BONES, COMPUTED tomography, DEOXY sugars, DIFFERENTIAL diagnosis, MAGNETIC resonance imaging, RADIOPHARMACEUTICALS, POSITRON emission tomography, SYMPTOMS
Abstract

A 4-year old girl presenting gait difficulty was referred for spine X-ray and Magnetic Resonance Imaging (MRI). MRI showed several diffuse hypointense signals in sacral and lumbar vertebrae. In order to exclude a possible lymphoproliferative disease a 18-fluorodeoxyglucose positron emission tomography/computed tomography (18F-FDG-PET/CT) was requested. The PET/CT scan confirmed the MRI findings and demonstrated additional findings in the sternum. Therefore, a bone marrow biopsy was performed and a diagnosis of acute lymphoblastic leukaemia — early B type was made. [ABSTRACT FROM AUTHOR]

Published
2017
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15. PACSIN2rs2413739 Polymorphism and Thiopurine Pharmacokinetics: Validation Studies in Pediatric Patients

Author

Stocco, Gabriele, Franca, Raffaella, Favretto, Diego, Giurici, Nagua, Ventura, Alessandro, Decorti, Giuliana, Vinti, Luciana, Colombini, Antonella, Brivio, Erica, Bettini, Laura Rachele, Bini, Ilaria, Sismondi, Francesca, Mandese, Alessandra, Malusà, Noelia, Martelossi, Stefano, and Rabusin, Marco

Abstract

Thiopurines such as thioguanine (TG), mercaptopurine (MP) and its prodrug azathioprine (AZA) are key antileukemic and immunosuppressive drugs in the treatment of several pediatric diseases such as acute lymphoblastic leukemia (ALL) and inflammatory bowel disease (IBD): their therapeutic action is affected by the enzyme thiopurine-S-methyltransferase (TPMT) whose encoding gene is polymorphic and whose enzymatic activity is also trans-regulated by the intronic single nucleotide polymorphism (SNP) rs2413739 (T>C) in the PACSIN2gene.

Published
2017
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