CARRA Registry benefits children with rare rheumatologic diseases

December 3, 2013 – Laura Schanberg, MD, discusses the significant outcomes to date.

In 2002, pediatric rheumatologists created the Childhood Arthritis and Rheumatology Research Alliance (CARRA) with a mission to “Improve the health, well-being and outcomes of children and adolescents with rheumatic disease through fostering and facilitating collaborative research in prevention, treatment and cure.” In an effort to provide the best patient care, as well as monitor current practices and treatment effects, CARRA created a Registry. Initially funded by the American Recovery and Reinvestment Act of 2009, along with additional support from the Arthritis Foundation, the CARRA Registry began enrolling patients in May 2010, enrolling over 9,100 participants since inception.

The registry objectives are to:

  • Prospectively collect essential data elements from children, adolescents, and young adults with pediatric onset rheumatic disease.
  • Evaluate the safety of the therapeutic agents in persons with pediatric onset rheumatic diseases.
  • Evaluate clinical outcomes associated with the use of therapeutic agents in persons with pediatric onset rheumatic diseases.
  • Document the drug treatment pattern and clinical course of persons with pediatric onset rheumatic diseases over time.
  • Evaluate factors other than therapy that are associated with clinical outcomes in pediatric onset rheumatic diseases.

The DCRI is the data and clinical coordinating center for the CARRA registry, collaborating closely with the CARRA organization. The registry is managed by an Operations Committee, made up of both CARRA and DCRI, which takes direction from a broader Steering Committee.

One of the four principal investigators of the CARRA registry is Laura Schanberg, MD, professor of Pediatrics at Duke and also the Chair of CARRA (pictured). Schanberg discusses the significant outcomes to date from this registry, “We have amassed a large number of children with a rare disease who have been consented for research study. Since the diseases we study are rare, it has limited our ability to do research in this population until now.”

By having a registry with participants from across the country, pharmacosurveillance efforts can now consider treatments as a whole, including multiple drugs and any adverse effects. The journal Pediatrics recently published a paper about this pharmacosurveillance effort, “Using Registries to Identify Adverse Events in Rheumatic Diseases.” This paper was a collaboration of many universities and agencies from across the country. One of the study authors, Schanberg, stresses the importance of this surveillance in improving patient care and safety.

As member sites from the CARRA registry work together to establish best practices, pilot studies have been funded and are current underway to look at the comparative effectiveness of consensus treatment plans in four diseases: systemic JIA, lupus nephritis, localized cleroderma, and juvenile dermatomyositis. The future holds promise for helping children affected by these rare diseases.