JA Research Initiative
A Race Against Time
Despite the common yet inaccurate belief that arthritis is “an old person’s” disease, 300,000 American children endure the debilitating pain and severely disabling effects of juvenile arthritis (JA) in its many forms. From systemic juvenile idiopathic arthritis (JIA) -- a form of rheumatoid arthritis seen in children -- to systemic sclerosis -- a form of arthritis that affect the skin, muscle tissue, joints, blood vessels, and even internal organs -- juvenile arthritis robs children of the joys of childhood, altering and even threatening their lives.
Unfortunately, not all children with JA have access to a doctor who specializes in juvenile arthritis (a pediatric rheumatologist). Although there are effective treatments available for some forms of JA, none of them were developed especially for children. Even JA patients who have access to doctors with a clear understanding of the varying forms of the disease must still undergo a process of trial and error before an effective treatment is determined. This wastes valuable time while the child endures chronic pain, and the disease progresses, causing lasting damage and disability.
The Arthritis Foundation research program in juvenile arthritis seeks to provide a universal standard of care accessible by all medical professionals who treat children with JA. Our Flagship Initiative in juvenile arthritis is our partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA); through that partnership we are working to create a network of pediatric rheumatologists and a registry of children with JA -- allowing researchers to identify and analyze differences and similarities between patients and their responses to treatment. Ultimately, the registry will help researchers develop personalized medicine, the ultimate weapon in battling JA.
Already launched at 60 clinical research sites, the CARRA registry currently has 8,000 patients enrolled. As more patients are added to the registry, we believe this Flagship Initiative will accomplish significant goals within the next five years, including:
- Developing a better understanding of the effective use of existing drugs in children;
- Identifying newer drugs that are safer and more effective in children;
- Finding key predictors of who is at risk for developing JA, based on genetics or environment;
- Improving access to medications and other treatments; and
- Developing therapies to slow or halt the progression of JA.
To help achieve these goals, the Arthritis Foundation has invested more than $1 million JA-specific Research Grants and CARRA support in 2012. Since CARRA’s creation, the Foundation has invested $2.3 Million in the CARRA network and registry.
Through this initiative, the Arthritis Foundation and CARRA will establish a solid database of information to guide researchers to newer and safer drug therapies for JA patients. We will also help physicians determine the best course of personalized care for every JA patient from the outset of their treatment. Ultimately, we will give patients and their families confidence in the safety and efficacy of treatments that may not only stop the progress of their disease, but also restore some of the innate joy of childhood.
How You Can Help
Unless we reverse the trend, an estimated 67 million Americans will have arthritis by the year 2030. To curtail these numbers and achieve our research goals, the Arthritis Foundation needs your help. To learn more about how you can give click here.