Research & Registry

Recapture-JIA

Recapture-JIA

Disease Recapture after Drug Discontinuation and Flare in Juvenile Idiopathic Arthritis

Impact Quote
“Over the course of my daughter’s JIA journey, we have been blessed with very long periods of medicated remission.  We are grateful for those periods, but we have never opted to discontinue or reduce her medication.  While we would love to give her little body a break from treatments, we don’t know much about her future.  If her disease were to flare, it is still unknown whether or not we would be able to get her JIA under control again with the same medication and quickly.  If families had these answers, they could better make decisions about continuing, reducing, or withdrawing medications.”;
Parent of child with JIA

Project Description/Overview

This project will study children who have a flare of JIA after stopping their medicines for well-controlled disease. The study will measure how often the JIA flares can be controlled within 6 months of restarting medicine and will identify children whose flare may be more or less likely to be well-controlled quickly. The information from this project will help children with JIA, families, and providers make better decisions about when to stop medications.
Why This Is Important

No one wants to take medicines forever. Shots, infusions, storage of medicines, high costs and even the routine of regularly taking a medicine can be a burden. Therefore, doctors and parents often decide to stop using medication when children are well controlled for a long time.  But what happens if the child flares when the medication is stopped? Recapture JIA looks to learn if you can regain control with the same medication you used before.
This proposal 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 once inactive disease is achieved for children with JIA. The data collected during the study period will identify children with lower rates of successful recapture who may benefit from alternative management strategies, such as dose reduction instead of complete discontinuation. This study will also lay the groundwork for future research on biologic predictors of recapture and facilitate the development of personalized regimens for both discontinuing and re-initiating treatment following flare once initial remission is achieved.

Enrollment

This study aims to enroll 150 children with JIA who have stopped their medication(s) due to inactive disease and then flared and are restarting medications. Data will be collected during the clinic visit at the time of flare. Follow-up data will also be collected at the time of routine clinic visits approximately every 6 months. The study will be conducted at all CARRA sites participating in the Registry and data will be collected using the CARRA Registry.
There will be also be an optional blood collection at the time of disease flare.

Who is Involved?

PI: Sarah Ringold, MD MS (Seattle Children’s)

Co-Investigators:

  • Timothy Beukelman, MD MSCE (University of Alabama at Birmingham)
  • Daniel B. Horton, MD, MSCE (Rutgers Robert Wood Johnson Medical School)
  • Yukiko Kimura, MD (Joseph M. Sanzari Children’s Hospital, Hackensack University Medical Center)
  • Laura Schanberg, MD (Duke Clinical Research Institute and Duke University)
  • Rae Yeung, MD (University Health Network and Toronto Hospital for Sick Children)

Parent Partner

  • Melanie Kolheim (parent of child with JIA)

Additional Information

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

Links to further details, documents, etc.

CARRA general registry link
CARRA biobank link