Last week more than 400 pediatric rheumatologists, researchers, fellows, patients, parents and industry representatives, along with Arthritis Foundation staff members and volunteers, came together for the 2016 Annual Scientific Meeting of CARRA, the Childhood Arthritis and Rheumatology Research Alliance. Held in Toronto, Canada, this was CARRA’s largest annual meeting to date, with participants from renowned institutions across the United States and abroad.
For nearly 70 years, the Arthritis Foundation has been committed to serving families affected by juvenile arthritis and other childhood rheumatic diseases. We’ve supported CARRA since it formed more than a decade ago, and today our partnership is stronger than ever. Both CARRA and the Arthritis Foundation are working to improve treatments and outcomes for the estimated 300,000 children in the U.S. who live with arthritis and related conditions. Together, we are creating a more unified and powerful research and advocacy community by leveraging physicians, researchers and staff from both organizations.
“The Arthritis Foundation has transformed CARRA from a group of people who wanted to try to perform studies and affect change to a group that can actually do it,” says Dr. Timothy Beukelman, MD, of the University of Alabama at Birmingham and chair of the CARRA juvenile idiopathic arthritis committee.
While in Toronto, attendees heard from numerous speakers – including Claire Bombardier, MD, Bray Patrick-Lake, MS, Carol A. Wallace, MD, and Rae Young, MD – on topics such as utilizing registries, consensus treatment plans and the importance of patient engagement in research. The 2016 CARRA Annual Scientific Meeting abstract review committee accepted 40 abstracts, and their posters were on display throughout the four-day conference.
Additionally, the meeting offered 30 workgroup sessions for attendees to hear from their colleagues on current studies and to network with other CARRA members to discuss strategies and spark new ideas. More than 40 patients and parents also attended various workgroups to provide input and further engage with researchers.
“The CARRA Annual Scientific Meeting acts as an incubator for ideas. CARRA clearly is fostering ideas in research, and this is going to have an impact – it is going to change the way we practice,” says Dr. Lawrence Zemel, MD, and division head of rheumatology at Connecticut Children’s Medical Center. “The relationship between the Arthritis Foundation and CARRA is a great relationship because it goes both ways. The Arthritis Foundation is providing us with the tools so we can do the work that needs to be done.”
Diagnosed at age 6, Kate Murphy was a top fundraiser and volunteer of the year for the Arthritis Foundation San Diego office. She participated in JA camps in her youth and volunteered as a teen counselor at Camp Esperanza. Now 24, Kate is currently serving as a patient stakeholder on the STOP-JIA stakeholder advisory panel.
Kate’s focus is to be the voice of the patient as part of the STOP-JIA study. Over the course of three years, the study aims to look at comprehensive treatment plans and different approaches to medication used to treat JIA. Kate has helped create recruitment materials for newly diagnosed families, participates in calls with sites that are enrolling patients in the study, and acts as a resource for physicians from a patient standpoint.
When asked if she wished a study like this had existed 18 years ago when she was first diagnosed, Kate says, “Absolutely! I have gone through such a long journey – and am still going through it – of what combination of medication works for me. I wish that because I know how hard it was and how frustrating it was. Those types of conclusions by looking at my chart could have helped someone else going through the same thing.
“Right now I am in more of a reflective state of really wanting to give back to the community, because I know how much research does help in figuring out how to treat a child with JA, but also gets us that much closer to finding a cure.”