Conquering Childhood Arthritis

At the Arthritis Foundation, we believe it’s imperative that science partnerships, patient data from registries and investments in the continuum of research, from translational to implementation science, are all utilized to expedite a cure.

Better treatments are needed sooner than later. In the era of personalized medicine, the treatment and care of children with arthritis based on the specific needs and conditions of an individual patient will begin to eliminate the previous trial-and-error approach. The engagement of patients in this research quest will help unravel the mysteries of juvenile rheumatic diseases.

The Arthritis Foundation partners with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to not only fund research for treatment options, but also to activate large-scale efforts that generate consensus treatment plants and address challenges of health equity. CARRA, a nonprofit research organization of more than 500 physicians, researchers and health care professionals throughout the United States and Canada, includes 90% of the active pediatric rheumatologists in North America.

Our partnership with CARRA ensures that issues important to patients and families guide the direction of research. Furthermore, our funding support equips CARRA with the resources to enhance and expand research data collection for new discoveries. Together, we are building a patient registry to help improve and standardize patient care and find cures for the many forms of juvenile arthritis (JA).

Since 2002, the Arthritis Foundation has invested over $35 million toward childhood arthritis research, thanks to the generous support of our donors. Donors have fueled special research projects through our annual Juvenile Arthritis Family Summit, as well as the Juvenile Idiopathic Arthritis (JIA) Patient-Focused Drug Development meeting co-hosted by the Foundation and CARRA. The results from this meeting bring patient voices to the development of new FDA guidance for JIA research.

Donors also fund a variety of investigator-initiated grants in partnership with CARRA, supporting specific research, pediatric rheumatology training, early career development awards, investigator-initiated research grants and other components. Investigators can learn more about Arthritis Foundation-funded research opportunities on the CARRA Grants and Funding page.

As part of the Patients, Advocates & Rheumatology Teams Network for Research & Service (PARTNERS), we are working with other consortium members to create a platform where patients and their families can participate in research they feel is most important. When patients and families register with PARTNERS, information is collected about their illness, background and interests, which helps identify specific, meaningful research opportunities. Once registered, they learn about suitable activities within PARTNERS.

These can include:

• Completing online surveys
• Serving on a PARTNERS committee
• Contributing personal experience and skills to projects
• Contributing to research topic ideas and helping write research study questions
• Providing patient perspectives for study designs
• Helping researchers communicate study results in a way that’s easier for patients and families to understand