Patients & Families

Registry

 

The CARRA Registry was created to monitor the long term safety of the medications used to treat pediatric rheumatic diseases. A recent survey of caregivers of children with rheumatic diseases listed understanding long term safety of medications as their #1 priority. But the registry does so much more: It also collects large amounts of information on thousands of patients, their treatments, side effects and quality of life, so you will be able to make more informed decisions about your/your child’s health. The goal is to have all the information you need to choose the safest treatment for your desired outcome.


What is the CARRA Registry?

The CARRA Registry is a database of information collected about children and young adults with pediatric-onset rheumatic diseases such as juvenile idiopathic arthritis (JIA), lupus and juvenile dermatomyositis (JDM). Patient families from all over North America can join the CARRA Registry.  A map of clinics who enroll for the registry can be found below.  Information collected by the CARRA Registry includes:

  •   Medications used
  •   Blood test results
  •   Information your doctor enters about how you are doing
  •   Information you enter about how you are doing (called Patient Reported Outcomes or PROs)
  •   Any side effects or illnesses you may have

The securely stored identity protected information is then shared with CARRA members to better understand pediatric rheumatic diseases.  The CARRA Registry will be expanding to add juvenile scleroderma soon!

Pediatric rheumatic diseases are life-long. We often don’t know what happens to the child’s disease after they transition to an adult doctor.  The CARRA Registry collects information for at least 10 years and includes ways of collecting information from young adults no longer under the care of a pediatric rheumatologist.

Patient Families and CARRA members create a CARRA Registry Newsletter.  The newsletter contains more information about the Registry and CARRA research studies.

To learn more about the CARRA Registry and see some Frequently Asked Questions, please click on the CARRA Registry Brochure below.

CARRA Registry Brochure        


Registry Parent/Patient Advisory Committee (RPAC)

Through support received from the Arthritis Foundation, CARRA formed a Registry Parent/Patient Advisory Committee (RPAC) in January 2020. The RPAC has two primary roles:

  • Share CARRA Registry information with pediatric rheumatology patients and caregivers
  • Advise CARRA Registry leadership on Registry related activities

"We are so excited to welcome the patients and parents to the Registry Patient/Parent Advisory Committee, which will make the CARRA Registry even better and more relevant. The RPAC's ideas and input are incredibly important to the Registry's mission: what's important to our patients is at the heart of and the reason for the research we do!"

-- Yuki Kimura, Registry PI

JIA mom, Melanie Kohlheim, chairs the RPAC, which includes 10 members who represent conditions currently captured in the CARRA Registry. New members will be appointed to the RPAC as new conditions are added to the Registry, current members end their service, or new skills/perspectives are needed to perform RPAC activities.

"We look forward to having expert help at making the Registry more patient-centered and maintaining patient interest over the years. Melanie and Vincent have put together a terrific group with varying professional skills and interests that will help us continue to enhance the registry and make sure we address patient concerns."

-- Laura Schanberg, Registry PI

The RPAC meets monthly and develops the content for three Registry Newsletters each year. If you are a pediatric rheumatology stakeholder (parent, patient, healthcare provider, payor, industry partner, etc.) and have ideas for newsletter articles or questions/comments about the Registry, please email Melanie Kohlheim (RPAC Chair) at [email protected]


For additional Registry questions, please contact our Director of Partnerships & Patient Engagement, Vincent Del Gaizo, at [email protected].