Conquering Childhood Arthritis
The Arthritis Foundation is incorporating the participation of patients and their families (commonly referred to as patient engagement) in all aspects of our programs to ensure that the issues they care about guide our efforts to unravel the mysteries of juvenile rheumatic diseases. Personalized medicine - treatment and care based on the specific needs and condition of an individual patient - will eliminate the current trial-and-error approach.
The Arthritis Foundation partners with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to not only fund research for disease treatment options, but also to activate large-scale patient engagement to compare the effectiveness of different treatments both in the short- and long-term. Our partnership with CARRA ensures that issues important to patients and families guide the direction of research.
CARRA is a non-profit research organization of more than 500 physicians, researchers and other health care professionals throughout the US and Canada. Their membership includes more than 90% of the active pediatric rheumatologists in North America.
Our support equips CARRA with the resources to enhance and expand research data collection that forms the basis for future studies and new discoveries. The Arthritis Foundation, with CARRA, are building a patient registry to help improve and standardize patient care and find cures for the many forms of juvenile rheumatic diseases.
Patients and their families can learn more about Arthritis Foundation-CARRA partnership research activities at Kids Get Arthritis Too!
Since 2002, the Arthritis Foundation has invested nearly $30 million toward childhood arthritis research through the generous support of our donors! Donors have enabled us to fund special research projects at our Juvenile Arthritis conferences, as well as the Juvenile Idiopathic Arthritis (JIA) Patient-Focused Drug Development meeting which the Arthritis Foundation co-hosted with CARRA. The results from this meeting will lend patient voices to the development of new FDA guidance for JIA research.
Donors also allow us to continue offering a variety of investigator-initiated grants in partnership with CARRA. These range from specific research support, through training and site support funding. Investigators can learn more about Arthritis Foundation-funded research opportunities on the CARRA Grants and Funding page.
As a member of the Patients, Advocates & Rheumatology Teams Network for Research & Service (PARTNERS), we are working with other consortium members to create a platform that includes the participation and voice of patients and families in research that they feel is most important to their lives in living with the disease. When patients and families register with PARTNERS, information is collected about them, their disease, backgrounds, skills and interests that help identify the participation activities they will find most meaningful. Once registered, they will be informed of opportunities for participation within PARTNERS. Opportunities may include participation in the following ways:
- Completing online surveys
- Serving on a PARTNERS committee
- Contribute personal experience and skills on projects
- Contribute to research topic ideas and help write research study questions
- Provide patient perspective to study design
- Helping researchers communicate technical study results in a way that is more meaningful for patients and families
To find out more and join, visit PARTNERS.