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Research ArticlePediatric Rheumatology

Pilot Study of the Juvenile Dermatomyositis Consensus Treatment Plans: A CARRA Registry Study

Kuan Liu, George Tomlinson, Ann M. Reed, Adam M. Huber, Olli Saarela, Sharon M. Bout-Tabaku, Megan Curran, Jeffrey A. Dvergsten, Barbara A. Eberhard, Lawrence K. Jung, Susan Kim, Sarah Ringold, Kelly A. Rouster-Steven, Melissa Tesher, Dawn M. Wahezi and Brian M. Feldman for the CARRA Registry Investigators
The Journal of Rheumatology January 2021, 48 (1) 114-122; DOI: https://doi.org/10.3899/jrheum.190494
Kuan Liu
1K. Liu, MMath, B.M. Feldman, MD, MSc, FRCPC, The Hospital for Sick Children, Toronto, and Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada;
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George Tomlinson
2G. Tomlinson, PhD, Department of Medicine, University Health Network, Toronto, Ontario, Canada;
2G. Tomlinson, PhD, Department of Medicine, University Health Network, Toronto, Ontario, Canada;
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Ann M. Reed
3A.M. Reed, MD, Department of Pediatrics, Duke University Medical Center, Durham, North Carolina, USA;
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Adam M. Huber
4A.M. Huber, MD, MSc, IWK Health Centre, Halifax, Nova Scotia, Canada;
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Olli Saarela
5O. Saarela, PhD, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada;
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Sharon M. Bout-Tabaku
6S.M. Bout-Tabaku, MD, MSCE, Department of Pediatric Medicine, Sidra Medicine, Doha, Weill Cornell Medicine – Qatar, Doha, Qatar;
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Megan Curran
7M.L. Curran, MD, Department of Pediatrics, University of Colorado, Denver, Colorado, USA;
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Jeffrey A. Dvergsten
8J.A. Dvergsten, MD, Department of Pediatrics, Duke University Medical Center, Durham, and Department of Pediatrics, Duke Children’s Hospital, Durham, North Carolina, USA;
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Barbara A. Eberhard
9B.A. Eberhard, MBBS, MS, Division of Pediatric Rheumatology, Steven and Alexandra Cohen Children’s Medical Center of New York, Lake Success, New York, and Department of Pediatrics, Hofstra Northwell School of Medicine, Hempstead, New York, USA;
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Lawrence K. Jung
10L.K. Jung, MD, Division of Rheumatology, Children’s National Health System, Washington, D.C., USA;
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Susan Kim
11S. Kim, MD, MMSc, Department of Pediatrics, University of California San Francisco, San Francisco, California, USA;
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Sarah Ringold
12S. Ringold, MD, Seattle Children’s Hospital and Research Institute, Seattle, Washington, USA;
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Kelly A. Rouster-Steven
13K.A. Rouster-Steven, MD, Department of Pediatrics, Emory University School of Medicine, Children’s Healthcare of Atlanta, Atlanta, Georgia, USA;
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Melissa Tesher
14M. Tesher, MD, Comer Children’s Hospital, University of Chicago Medical Center, Chicago, Illinois, USA;
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Dawn M. Wahezi
15D.M. Wahezi, MD, Msc, Division of Pediatric Rheumatology, the Children’s Hospital at Montefiore, Bronx, New York, USA.
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Brian M. Feldman
1K. Liu, MMath, B.M. Feldman, MD, MSc, FRCPC, The Hospital for Sick Children, Toronto, and Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada;
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  • For correspondence: brian.feldman@sickkids.ca
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Abstract

Objectives. To determine the feasibility of comparing the Childhood Arthritis and Rheumatology Research

Alliance (CARRA) consensus treatment plans (CTP) in treating moderate new-onset juvenile dermatomyositis (JDM) using the CARRA registry, and to establish appropriate analytic methods to control for confounding by indication and missing data.

Methods. A pilot cohort of 39 patients with JDM from the CARRA registry was studied. Patients were assigned by the treating physician, considering patient/family preferences, to 1 of 3 CTP: methotrexate (MTX) and prednisone (MP); intravenous (IV) methylprednisolone, MTX, and prednisone (MMP); or IV methylprednisolone, MTX, prednisone, and IV immunoglobulin (MMPI). The primary outcome was the proportion of patients achieving moderate improvement at 6 months under each CTP. Statistical methods including multiple imputation and inverse probability of treatment weighting were used to handle missing data and confounding by indication.

Results. Patients received MP (n = 13), MMP (n = 18) and MMPI (n = 8). Patients in all CTP had significant improvement in disease activity. Of the 36 patients who remained in our pilot study at 6 months, 16 (44%) of them successfully achieved moderate improvement at 6 months (6/13, 46% for MP; 7/15, 47% for MMP; 3/8, 38% for MMPI). After correcting for confounding, there were no statistically significant pairwise differences between the CTP (P = 0.328–0.88).

Conclusion. We gained valuable experience and insight from our pilot study that can be used to guide the design and analysis of comparative effectiveness studies using the CARRA registry CTP approach. Our analytical methods can be adopted for future comparative effectiveness studies and applied to other rare disease observational studies.

Key Indexing Terms:
  • juvenile dermatomyositis
  • pediatric rheumatology
  • registries
  • treatment
  • Accepted for publication February 10, 2020.
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1 Jan 2021
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Pilot Study of the Juvenile Dermatomyositis Consensus Treatment Plans: A CARRA Registry Study
Kuan Liu, George Tomlinson, Ann M. Reed, Adam M. Huber, Olli Saarela, Sharon M. Bout-Tabaku, Megan Curran, Jeffrey A. Dvergsten, Barbara A. Eberhard, Lawrence K. Jung, Susan Kim, Sarah Ringold, Kelly A. Rouster-Steven, Melissa Tesher, Dawn M. Wahezi, Brian M. Feldman
The Journal of Rheumatology Jan 2021, 48 (1) 114-122; DOI: 10.3899/jrheum.190494

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Pilot Study of the Juvenile Dermatomyositis Consensus Treatment Plans: A CARRA Registry Study
Kuan Liu, George Tomlinson, Ann M. Reed, Adam M. Huber, Olli Saarela, Sharon M. Bout-Tabaku, Megan Curran, Jeffrey A. Dvergsten, Barbara A. Eberhard, Lawrence K. Jung, Susan Kim, Sarah Ringold, Kelly A. Rouster-Steven, Melissa Tesher, Dawn M. Wahezi, Brian M. Feldman
The Journal of Rheumatology Jan 2021, 48 (1) 114-122; DOI: 10.3899/jrheum.190494
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Keywords

JUVENILE DERMATOMYOSITIS
PEDIATRIC RHEUMATOLOGY
REGISTRIES
TREATMENT

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