Disease Recapture after Drug Discontinuation and Flare in Juvenile Idiopathic Arthritis (Recapture-JIA)

Disease Area:
Juvenile Idiopathic Arthritis (JIA)

Biosample Status:
Biosample Available

About the Recapture-JIA Study

Shots, infusions, storage of medicines, high costs, and even the routine of regularly taking treatment can be a burden. There are many reasons why doctors and parents often decide to stop using medication when children with chronic diseases like JIA are well-controlled for a long time. However, not much is known about the risks and benefits of continuing to use medication versus stopping once inactive disease is achieved.

In this study, researchers want to learn:

  • Which children with JIA will have flares after stopping their medicine when their disease is well-controlled
  • How often JIA flares can be controlled within 6 months of restarting the stopped medicine
  • Which children will have flares that may be more or less likely to be controlled quickly

This study will generate much-needed information for providers and families to make more informed decisions about the risks and benefits of continued medication use versus stopping. The study also helps us begin to understand biological factors and personalized approaches for discontinuing and restarting treatments after remission.

Study Updates and Findings

Results from Recapture-JIA were first published in Arthritis Care & Research in August 2022:

  • Half of JIA flares were successfully recaptured within 6 months after medication discontinuation of conventional synthetic or biologic disease-modifying antirheumatic drugs (DMARDs), but rates varied across JIA categories.
  • Two thirds of children achieved inactive disease by 12 months.
  • Past use and restarted use of a biologic were associated with higher rates of recapture.
  • More joints with a loss of range of motion was associated with lower rates of recapture.

This is the first study to focus on JIA outcomes after medication discontinuation and flare using a large multicenter database, the CARRA Registry. More research to understand biologic predictors of successful recapture in JIA are still needed but this study provides a starting point to inform decision-making among patients, families and clinicians.

About the Participants

  • Children with JIA. All participants with JIA enrolled or newly enrolling in the CARRA Registry.
  • Discontinued treatment for inactive disease. JIA participants treated with a disease-modifying antirheumatic drug (DMARD) or biologic that was discontinued by their physician for inactive disease.
  • Restarting treatment for disease flare. JIA patients were off of all JIA medications and may be restarting DMARDs, biologics, or steroids.

About the Study Team

Recapture-JIA is funded by the American College of Rheumatology and the Rheumatology Research Foundation. The project is also supported by collaboration with Understanding Childhood Arthritis Network (UCAN).

Lead researchers (Principal Investigator):

  • Sarah Ringold, MD, MS, Seattle Children’s Hospital (former)
  • Timothy Beukelman, MD, MSCE
  • Daniel B. Horton, MD, MSCE, Rutgers Robert Wood Johnson Medical School
  • Yukiko Kimura, MD, Hackensack University Medical Center
  • Laura Schanberg, MD, Duke Clinical Research Institute and Duke University
  • Rae Yeung, MD, University Health Network, Toronto Hospital for Sick Children

Patient and parents partner:

  • Melanie Kohlheim

To learn more about this project, please contact [email protected].

Related Research Projects

Disease Area:
Juvenile Idiopathic Arthritis (JIA)

CARRA Registry Research Network for SJIA-LD (CARE-NETS) Study

This project launches the first research network to collect clinical data and blood samples from children with systemic JIA and lung disease through the CARRA Registry.

Disease Area:
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Advancing the Science of Pediatric Patient-Reported Outcomes for Children with Chronic Disease (PEPR)

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Disease Area:
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Precision Decisions

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