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1. Juvenile arthritis management in less resourced countries (JAMLess): consensus recommendations from the Cradle of Humankind.

Author

Scott, Christiaan, Chan, Mercedes, Slamang, Waheba, Okong'o, Lawrence, Petty, Ross, Laxer, Ronald M., Katsicas, María-Martha, Fredrick, Francis, Chipeta, James, Faller, Gail, Pileggi, Gecilmara, Saad-Magalhaes, Claudia, Wouters, Carine, Foster, Helen E., Kubchandani, Raju, Ruperto, Nicolino, and Russo, Ricardo

Subjects
*RHEUMATOLOGISTS, *DIAGNOSIS, *ARTHRITIS, *RHEUMATISM, *YOUNG adults, *COMMUNICABLE diseases
Abstract

Juvenile idiopathic arthritis (JIA) is the most prevalent chronic rheumatic disease in children and young people (CYP) and a major cause of pain and disability. The vast majority of the world's children and their families live in less resourced countries (LRCs) and face significant socioeconomic and healthcare challenges. Current recommendations for standards of care and treatment for children with JIA do not consider children living in less resourced countries. In order to develop appropriate recommendations for the care of CYP with JIA in less resourced countries a meeting of experienced pediatric rheumatologists from less resourced countries was convened with additional input from a steering group of international pediatric rheumatologists with experience in developing recommendations and standards of care for JIA. Following a needs assessment survey of healthcare workers caring for CYP with JIA in LRC, a literature review was carried out and management recommendations formulated using Delphi technique and a final consensus conference. Responses from the needs assessment were received from 121/483 (25%) practitioners from 25/49 (51%) less resourced countries. From these responses, the initial 84 recommendations were refined and expanded through a series of 3 online Delphi rounds. A final list of 90 recommendations was proposed for evaluation. Evidence for each statement was reviewed, graded, and presented to the consensus group. The degree of consensus, level of agreement, and level of evidence for these recommendations are reported. Recommendations arrived at by consensus for CYP with JIA in less resourced countries cover 5 themes: (1) diagnosis, (2) referral and monitoring, (3) education and training, (4) advocacy and networks, and (5) research. Thirty-five statements were drafted. All but one statement achieved 100% consensus. The body of published evidence was small and the quality of evidence available for critical appraisal was low. Our recommendations offer novel insights and present consensus-based strategies for the management of JIA in less resourced countries. The emphasis on communicable and endemic diseases influencing the diagnosis and treatment of JIA serves as a valuable addition to existing JIA guidelines. With increasing globalization, these recommendations as a whole provide educational and clinical utility for clinicians worldwide. The low evidence base for our recommendations reflects a shortage of research specific to less resourced countries and serves as an impetus for further inquiry towards optimizing care for children with JIA around the world. [ABSTRACT FROM AUTHOR]

Published
2019
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3. The Afrikaans version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR).

Author

Scott, Christiaan, Okong’o, Lawrence, Brice, Nicky, Murless, Sarah, Slamang, Waheba, Fadlelmola, Abubaker, Consolaro, Alessandro, Bovis, Francesca, Ruperto, Nicolino, and For the Paediatric Rheumatology International Trials Organisation (PRINTO)

Subjects
*ETIOLOGY of diseases, *JUVENILE idiopathic arthritis, *TEST reliability, *PSYCHOMETRICS, *CHILD care
Abstract

The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Afrikaans language. The reading comprehension of the questionnaire was tested in ten JIA parents and patients. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the three Likert assumptions, floor/ceiling effects, internal consistency, Cronbach’s alpha, interscale correlations, test-retest reliability, and construct validity (convergent and discriminant validity). A total of 91 JIA patients (4.4% systemic JIA, 35.1% oligoarticular, 23.1% RF negative polyarthritis, 37.4% other categories), and 98 healthy children were enrolled in one paediatric rheumatology centre. The JAMAR components discriminated well healthy subjects from JIA patients. All JAMAR components revealed satisfactory psychometric performances. In conclusion, the Afrikaans version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and in clinical research. [ABSTRACT FROM AUTHOR]

Published
2018
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4. Do the radiographic features of joint destruction in tophaceous gout imply a different pathophysiology to that of rheumatoid and psoriatic arthritis?

Author

Arendse, Regan, Gcelu, Ayanda, Scott, Christiaan, Beighton, Peter, and Kalla, Asgar

Subjects
JOINT injuries, MEDICAL radiology, GOUT, RHEUMATOID arthritis, PSORIATIC arthritis, PATHOLOGICAL physiology
Abstract

The article presents a study which determines whether the radiographic features of joint destruction in tophaceous gout (TG) imply a different pathophysiology to rheumatoid arthritis (RA) and psoriatic arthritis (PA). It carries a radiographic comparison of the articular damage in persons with RA, PA, and TG. It suggests that the pathophysiology of joint destruction in TG is different to that in RA and PA.

Published
2010
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5. Update the WHO EML to improve global paediatric rheumatology.

Author

Foster, Helen E. and Scott, Christiaan

Subjects
*RHEUMATOLOGY, *WORLD health, *DRUGS
Abstract

The World Health Organization (WHO) Essential Medicines List (EML) informs policy makers about which medications should be prioritized and is particularly important for countries with limited resources. However, the EML lacks vital medicines used in paediatric rheumatology, the inclusion of which could transform the lives of many children around the world. [ABSTRACT FROM AUTHOR]

Published
2020
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6. Proceedings of the 2016 Childhood Arthritis and Rheumatology Research Alliance (CARRA) Scientific Meeting

Author

Fotis, Lampros, Shaikh, Nur, Baszis, Kevin, French, Anthony, Tarr, Phillip, Grevich, Sriharsha, Lee, Peggy, Ringold, Sarah, Leroux, Brian, Leahey, Hannah, Yuasa, Megan, Foster, Jessica, Sokolove, Jeremy, Lahey, Lauren, Robinson, William, Newsom, Joshua, Stevens, Anne, Karasawa, Rie, Tamaki, Mayumi, Tanaka, Megumi, Sato, Toshiko, Yudoh, Kazuo, Jarvis, James N., Moncrieffe, Halima, Bennett, Mark F., Tsoras, Monica, Luyrink, Lorie, Xu, Huan, Prahalad, Sampath, Morris, Paula, Dare, Jason, Nigrovic, Peter A., Rosenkranz, Margalit, Becker, Mara, O’Neil, Kathleen M., Griffin, Thomas, Lovell, Daniel J., Grom, Alexei A., Medvedovic, Mario, Thompson, Susan D., Zhu, Lisha, Jiang, Kaiyu, Wong, Laiping, Buck, Michael J, Chen, Yanmin, Brungs, Laura, Liu, Tao, Wang, Ting, Jarvis, James N, Alsaeid, Khaled, Alfailakawi, Jasim, Alenezi, Hamid, Alsaeed, Hazim, Beukelman, Tim, Natter, Marc, Ilowite, Norm, Mieszkalski, Kelly, Burrell, Grendel, Best, Brian, Bristow, Helen, Carr, Shannon, Dennos, Anne, Kaufmann, Rachel, Kimura, Yukiko, Schanberg, Laura, Blier, Peter R., Boneparth, Alexis, Wenderfer, Scott E., Moorthy, L. Nandini, Radhakrishna, Suhas M., Sagcal-Gironella, Anna Carmela P., von Scheven, Emily, Gedik, Kader Cetin, Siddique, Salma, Aguiar, Cassyanne L., Erkan, Doruk, Cohen, Ezra, Lee, Yvonne, Dossett, Michelle, Mehta, Darshan, Davis, Roger, Gilbert, Mileka, Goilav, Beatrice, Meidan, Esra, Hsu, Joyce, Chua, Anabelle, Ardoin, Stacy, Von Scheven, Emily, Ruth, Natasha M., Hui-Yuen, Joyce, Bermudez, Liza, Cook, Ashlea, Imundo, Lisa, Starr, Amy, Eichenfield, Andrew, Askanase, Anca, Janow, Ginger, Schanberg, Laura E., Setoguchi, Soko, Hasselblad, Victor, Mellins, Elizabeth D., Schneider, Rayfel, Beukelman, Timothy, Morgan, Esi, Graham, T. Brent, Ibarra, Maria, Ruas, Yonit Sterba, Klein-Gitelman, Marisa, Onel, Karen, Punaro, Marilynn, Toib, Dana, Van Mater, Heather, Weiss, Jennifer E., Weiss, Pamela F., Kwok, Timothy S. H., Bisaillon, Jacinthe, Smith, Christine, Brosseau, Lucie, Stinson, Jennifer, Huber, Adam M., Duffy, Ciaran M., April, Karine Toupin, Lewandowski, Laura B., Scott, Christiaan, Li, Suzanne C., Torok, Kathryn S., Rabinovich, C. Egla, Hong, Sandy D., Becker, Mara L, Dedeoglu, Fatma, Ibarra, Maria F., Ferguson, Polly J, Fuhbrigge, Rob C., Stewart, Katie G., Pope, Elena, Laxer, Ronald M., Mason, Thomas G., Higgins, Gloria C., Li, Xiaohu, Punaro, Marilynn G., Tomlinson, George, Pullenayegum, Eleanor, Matelski, John, Feldman, Brian M., Manthiram, Kalpana, Correa, Hernan, Edwards, Kathryn, Oberle, Edward J., Bayer, Michelle, Co, Dominic O., Baris, Hatice Ezgi, Chiu, Yvonne, Huber, Adam, Kim, Susan, Orandi, Amir B., Baszis, Kevin W., Dharnidharka, Vikas, Hoeltzel, Mark F., Reed, Ann, Goh, Y. Ingrid, Schnabel, Anja, Range, Ursula, Hahn, Gabriele, Siepmann, Timo, Berner, Reinhard, Hedrich, Christian Michael, Stevens, Brandi, Li, Suzanne, Hershey, Nicole, Curran, Megan, Higgins, Gloria, Moore, Katharine, Rabinovich, Egla, Stevens, Anne M., Connelly, Mark, Luca, Nadia, Spiegel, Lynn, Tsimicalis, Argerie, Luca, Stephanie, Tajuddin, Naweed, Berard, Roberta, Barsalou, Julia, Campillo, Sarah, Dancey, Paul, Duffy, Ciaran, Feldman, Brian, Johnson, Nicole, McGrath, Patrick, Shiff, Natalie, Tse, Shirley, Tucker, Lori, Victor, Charles, Lalloo, Chitra, Harris, Lauren, Cafazzo, Joseph, Laxer, Ronald, Bullock, Danielle R., Vehe, Richard K., Zhang, Lei, Correll, Colleen K., Ganguli, Suhas, Shenberger, Max, Korumilli, Ritesh, Gottlieb, Beth, Rodriguez, Martha, de Ranieri, Deirdre, Wagner-Weiner, Linda, Tesher, Melissa, Wojcicki, Elizabeth Roth, Maletta, Kristyn L., Malloy, Marsha, Thomson, Sarah, Olson, Judyann C., Sule, Sangeeta, Rubinstein, Tamar B., Okamura, Daryl M., Chua, Annabelle, Greenbaum, Laurence A., Lane, Jerome C., Ardoin, Stacy P., Woo, Jennifer M. P., Malloy, Marsha M., Jegers, James A., Hahn, Dustin J., Hintermeyer, Mary K., Martinetti, Stacey M., Heckel, Gretchen R., and Roth-Wojcicki, Elizabeth L.

Subjects
Rheumatology, Immunology and Allergy, Pediatrics, Perinatology, and Child Health, Meeting Abstracts
Abstract

Table of Contents P1 Serologic evidence of gut-driven systemic inflammation in juvenile idiopathic arthritis Lampros Fotis, Nur Shaikh, Kevin Baszis, Anthony French, Phillip Tarr P2 Oral health and anti-citrullinated peptide antibodies (ACPA) in juvenile idiopathic arthritis Sriharsha Grevich, Peggy Lee, Sarah Ringold, Brian Leroux, Hannah Leahey, Megan Yuasa, Jessica Foster, Jeremy Sokolove, Lauren Lahey, William Robinson, Joshua Newsom, Anne Stevens P3 Novel autoantigens for endothelial cell antibodies in pediatric rheumatic diseases identified by proteomics Rie Karasawa, Mayumi Tamaki, Megumi Tanaka, Toshiko Sato, Kazuo Yudoh, James N. Jarvis P4 Transcriptional profiling reveals monocyte signature associated with JIA patient poor response to methotrexate Halima Moncrieffe, Mark F. Bennett, Monica Tsoras, Lorie Luyrink, Huan Xu, Sampath Prahalad, Paula Morris, Jason Dare, Peter A. Nigrovic, Margalit Rosenkranz, Mara Becker, Kathleen M. O’Neil, Thomas Griffin, Daniel J. Lovell, Alexei A. Grom, Mario Medvedovic, Susan D. Thompson P5 A multi-dimensional genomic map for polyarticular juvenile idiopathic arthritis Lisha Zhu, Kaiyu Jiang, Laiping Wong, Michael J Buck, Yanmin Chen, Halima Moncrieffe, Laura Brungs, Tao Liu, Ting Wang, James N Jarvis P6 Tocilizumab for treatment of children with refractory JIA Khaled Alsaeid, Jasim Alfailakawi, Hamid Alenezi, Hazim Alsaeed P7 Clinical characteristics of the initial patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry Tim Beukelman, Marc Natter, Norm Ilowite, Kelly Mieszkalski, Grendel Burrell, Brian Best, Helen Bristow, Shannon Carr, Anne Dennos, Rachel Kaufmann, Yukiko Kimura, Laura Schanberg P8 Comparative performance of small and large clinical centers in a comprehensive pediatric rheumatology disease registry Peter R Blier P9 Clinical characteristics of children with membranous lupus nephritis: The Childhood Arthritis and Rheumatology Research Alliance Legacy Registry Alexis Boneparth, Scott E. Wenderfer, L. Nandini Moorthy, Suhas M. Radhakrishna, Anna Carmela P. Sagcal-Gironella, Emily von Scheven P10 Rituximab use in pediatric lupus anticoagulant hypoprothrombinemia syndrome - a two center experience Kader Cetin Gedik, Salma Siddique, Cassyanne L. Aguiar, Doruk Erkan P11 Predictors of complementary and alternative medicine use and response in children with musculoskeletal conditions Ezra Cohen, Yvonne Lee, Michelle Dossett, Darshan Mehta, Roger Davis P12 Comparison of pediatric rheumatology and nephrology survey results for the treatment of refractory proliferative lupus nephritis and renal flare in juvenile SLE Mileka Gilbert, Beatrice Goilav, Esra Meidan, Joyce Hsu, Alexis Boneparth, Anabelle Chua, Stacy Ardoin, Scott E. Wenderfer, Emily Von Scheven, Natasha M. Ruth P13 Transitioning lupus patients from pediatric to adult rheumatology Joyce Hui-Yuen, Kader Cetin Gedik, Liza Bermudez, Ashlea Cook, Lisa Imundo, Amy Starr, Andrew Eichenfield, Anca Askanase P14 The systemic juvenile idiopathic arthritis cohort of the Childhood Arthritis & Rheumatology Research Alliance Registry Ginger Janow, Laura E. Schanberg, Soko Setoguchi, Victor Hasselblad, Elizabeth D. Mellins, Rayfel Schneider, Yukiko Kimura, The CARRA Legacy Registry Investigators P15 Results of the pilot study of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensus treatment plans for new-onset systemic juvenile idiopathic arthritis Yukiko Kimura, Sriharsha Grevich, Timothy Beukelman, Esi Morgan, T Brent Graham, Maria Ibarra, Yonit Sterba Ruas, Marisa Klein-Gitelman, Karen Onel, Sampath Prahalad, Marilynn Punaro, Sarah Ringold, Dana Toib, Heather Van Mater, Jennifer E. Weiss, Pamela F. Weiss, Kelly Mieszkalski, Laura E. Schanberg P16 A systemic review of pain relief modalities in juvenile idiopathic arthritis: First step in developing a novel decision support intervention Timothy S. H. Kwok, Jacinthe Bisaillon, Christine Smith, Lucie Brosseau, Jennifer Stinson, Adam M. Huber, Ciaran M. Duffy, Karine Toupin April P17 Barriers and facilitators to care retention for pediatric systemic lupus erythematous patients in South Africa: A qualitative study Laura B Lewandowski, Christiaan Scott P18 Evaluating the feasibility of conducting comparative effectiveness studies in juvenile Localized Scleroderma (jLS) Suzanne C. Li, Kathryn S. Torok, C. Egla Rabinovich, Sandy D. Hong, Mara L Becker, Fatma Dedeoglu, Maria F. Ibarra, Polly J Ferguson, Rob C. Fuhbrigge, Katie G. Stewart, Elena Pope, Ronald M. Laxer, Thomas G. Mason, Gloria C. Higgins, Xiaohu Li, Marilynn G. Punaro, George Tomlinson, Eleanor Pullenayegum, John Matelski, Laura Schanberg, Brian M. Feldman P19 Tonsillar histology in patients with periodic fever, aphthous stomatitis, pharyngitis, adenitis (PFAPA) syndrome Kalpana Manthiram, Hernan Correa, Kathryn Edwards P20 Clinical course of juvenile dermatomyositis presenting as skin predominant disease Edward J. Oberle, Michelle Bayer, Dominic O. Co, Hatice Ezgi Baris, Yvonne Chiu, Adam Huber, Susan Kim P21 A Survey of musculoskeletal ultrasound practices of pediatric rheumatologists in North America Edward J Oberle, Timothy Beukelman P22 Assessment, classification and treatment of calcinosis as a complication of juvenile dermatomyositis: A survey of pediatric rheumatologists by the Childhood Arthritis and Rheumatology Research Alliance Amir B. Orandi, Kevin W. Baszis, Vikas Dharnidharka, Mark F. Hoeltzel, for the CARRA JDM Committee P23 CARRA dermatomyositis CTP pilot study Ann Reed, Adam Huber, George Tomlinson, Eleanor Pullenayegum, John Matelski, Y. Ingrid Goh, Laura Schanberg, Brian M. Feldman P24 Unexpectedly high incidences and prolonged disease activity in children with chronic non-bacterial osteomyelitis (CNO) as compared to bacterial osteomyelitis Anja Schnabel, Ursula Range, Gabriele Hahn, Timo Siepmann, Reinhard Berner, Christian Michael Hedrich P25 Juvenile systemic sclerosis cohort within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry: Follow up characteristics Brandi Stevens, Kathryn S. Torok, Suzanne Li, Nicole Hershey, Megan Curran, Gloria Higgins, Katharine Moore, Egla Rabinovich, Anne M. Stevens, for the CARRA Registry Investigators P26 Development and usability testing of an iPad and desktop psycho-educational game for children with Juvenile Idiopathic Arthritis and their parents Jennifer Stinson, Mark Connelly, Adam Huber, Nadia Luca, Lynn Spiegel, Argerie Tsimicalis, Stephanie Luca, Naweed Tajuddin, Roberta Berard, Julia Barsalou, Sarah Campillo, Paul Dancey, Ciaran Duffy, Brian Feldman, Nicole Johnson, Patrick McGrath, Natalie Shiff, Shirley Tse, Lori Tucker, Charles Victor P27 iCanCopeTM: User-centred design and development of a smartphone app to support self-management for youth with arthritis pain Jennifer Stinson, Chitra Lalloo, Lauren Harris, Joseph Cafazzo, Lynn Spiegel, Brian Feldman, Nadia Luca, Ronald Laxer P28 Accessing pediatric rheumatology care: Despite barriers, few parents prefer telemedicine Danielle R. Bullock, Richard K. Vehe, Lei Zhang, Colleen K. Correll1 P29 Exploration of factors contributing to time to achieve clinically inactive disease (CID) in juvenile idiopathic arthritis (JIA): A preliminary report Suhas Ganguli, Max Shenberger, Ritesh Korumilli, Beth Gottlieb P30 Pediatric rheumatology referral patterns: Presenting complaints of new patients at a large, urban academic center Martha Rodriguez, Deirdre de Ranieri, Karen Onel, Linda Wagner-Weiner, Melissa Tesher P31 Quality improvement (QI) initiatives in childhood systemic lupus erythematosus (cSLE) Elizabeth Roth Wojcicki, Kristyn L. Maletta, Dominic O. Co, Marsha Malloy, Sarah Thomson, Judyann C. Olson P32 Proliferative lupus nephritis in juvenile SLE: Support from the pediatric nephrology community for the definitions of responsiveness and flare in the 2012 consensus treatment plans Scott E. Wenderfer, Mileka Gilbert, Joyce Hsu, Sangeeta Sule, Tamar B. Rubinstein, Beatrice Goilav, Daryl M. Okamura, Annabelle Chua, Laurence A. Greenbaum, Jerome C. Lane, Emily von Scheven, Stacy P. Ardoin, Natasha M. Ruth P33 The steroid taper app: Making of a mobile app Jennifer M. P. Woo, Marsha M. Malloy, James A. Jegers, Dustin J. Hahn, Mary K. Hintermeyer, Stacey M. Martinetti, Gretchen R. Heckel, Elizabeth L. Roth-Wojcicki, Dominic O. Co

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