carra registry

Funding Juvenile Research Coordinators Across the County

The Arthritis Foundation is funding a new program to help support the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the CARRA Registry (registry). Eight sites were selected to receive funding to support the salary of a dedicated registry research coordinator for one year. Until now, some sites have been short-handed for this important research position.

Researchers collect information through studies on many pediatric patients with rheumatic diseases over time and store it in the registry.  Research coordinators play a critical role in making sure research studies run smoothly. Those supported by this program will:

  • Explain the registry to patients and families, answering all their questions before patients sign up.
  • Collect and enter information about patients’ diseases and how the disease and treatments affect them into the registry database.
  • Ensure the study records are correct, complete and current.
  • Keep track of all the patients who are taking part in the registry to make sure study information gets collected when patients come back to see their doctors at future visits.
  • Help increase enrollment in the registry and sub-studies (like the FROST for systemic JIA and STOP-JIA for polyarticular JIA).

The information collected helps researchers answer important questions about these diseases, the safety and effectiveness of the medicines used to treat them, and how patients do in the long-term.

We are providing $27,000 to each site for the research coordinator positions from April 1, 2018 through March 31, 2019. After the one-year pilot program, each site will be expected to support the research coordinator position through their own budgets. The eight sites include:

  • Children’s National Medical Center in Washington, DC
  • Indiana University School of Medicine in Indianapolis, IN
  • Randall Children’s Hospital at Legacy Emanuel in Portland, OR
  • Baylor College of Medicine Pediatric Immunology Allergy Rheumatology in Houston, TX
  • Saint Louis Children’s Hospital in St. Louis, MO
  • University of Iowa Hospitals and Clinics in Iowa City, IA
  • Levine Children’s Hospital/Carolinas Medical Center in Charlotte, NC
  • University of Florida – Shand’s Children’s Hospital in Gainesville, FL.

The sites chosen for this pilot program funding range from small to large centers, with diverse patient populations. Each site has a strong history of successfully recruiting patients to the registry, which will be boosted by providing a dedicated research coordinator to their teams.

Dr. Kathleen O’Neil, principal investigator for CARRA research at Indiana University School of Medicine, said the new research coordinator will help ensure that the registry datasets from their two sites are complete and up-to-date. With the help of this new position, patients will be able enroll before beginning treatment. She explained, “It’s very difficult to wait for a child who is sick to schedule a research appointment downtown and remain off treatment for a few more days.  Now we should be able to offer study participation to many more of our patients the first time they see their pediatric rheumatologist.”

Dr. Daniel Kingsbury of Randall Children’s Hospital stated: “Our site is excited to receive the research coordinator grant. This funding will provide the basis for training and transitioning the part-time study coordinator role to an internal member of our team.  With this new position, we will see more robust enrollment along with better oversight of the registry.  Many thanks to the CARRA grants committee for selecting our site and to the Arthritis Foundation for providing us this terrific opportunity!”

Our projects with CARRA help to support our Conquering Childhood Arthritis initiative, learn more about them here.

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