Two leading organizations, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the Arthritis Foundation, have partnered to align scientific agendas and expand research in the area. The move marks an important milestone in the fight against juvenile arthritis and pediatric rheumatic diseases, which affect an estimated 300,000 U.S. children.
The new partnership is designed to create a more powerful research and advocacy community by leveraging doctors, researchers and staff from both organizations in order to:
- Develop an organizational and financial strategy to enhance and sustain research in pediatric rheumatic diseases
- Develop and implement comparative effectiveness studies
- Increase community engagement in research, particularly by patients and families
A joint steering committee made up of representation from both organizations will guide the research agenda going forward. This alignment will streamline the process for raising funds for pediatric rheumatology research. Organizations, individuals and families can make donations for pediatric research knowing that the research agendas are unified.
A Welcoming Home for Families
The Arthritis Foundation provides opportunities for parents and children with all types of rheumatic diseases to meet other families at events, such as education days and family fun outings, in locations across the country. These connections are vital. They create friendships that last a lifetime, expanding the Arthritis Foundation’s extended family network.
The Juvenile Arthritis Conference
The Arthritis Foundation’s 31st annual Juvenile Arthritis (JA) Conference will be in Orlando, FL, July 23-26, 2015. The JA Conference is the Foundation’s signature nationwide event for families affected by juvenile idiopathic arthritis, lupus, myositis, ankylosing spondylitis and other rheumatic diseases.
Over the years the JA Conference has brought together almost 25,000 people—kids, parents, siblings, caretakers, health care professionals and other experts—for a life-changing educational event focusing on health, wellness and fun for those affected by pediatric rheumatic diseases.
The Arthritis Foundation partners with CARRA to align scientific agendas and expand research in pediatric rheumatic diseases through collaboration on initiatives such as the CARRA Registry. The CARRA Registry provides a tool that will likely enable answering many important questions about these diseases, including the effectiveness and long-term safety of treatments and disease outcomes, and will serve as the foundation for large clinical trials and biologic specimen collection for translational research initiatives.
Ensuring access to medications and treatments for kids with JA and pediatric rheumatic diseases is an advocacy priority. The Arthritis Foundation hosts our annual Advocacy Summit in Washington, DC, each March. It includes a Kids’ Summit, where children with JA and pediatric rheumatic diseases learn to advocate for themselves and meet children living with and affected by arthritis.
The Arthritis Foundation has JA camps and family days across the country that provide families the opportunity to network, learn and play with others in their area. For many kids who live with JA or pediatric rheumatic diseases, time with others who understand the reality of living with these diseases is a life-changing experience.
Powerful Tools & Resources
Newly-diagnosed families receive a “Power Pack” full of resources and information to help them on their unexpected journey. KidsGetArthritisToo.org features many timely and relevant resources, including news about the latest treatments, an educational rights toolkit, stories of kids and teens told in their own words and more.
The CARRA Registry is an observational study that enrolls children and adolescents with major rheumatic diseases followed at participating study sites. The original "Legacy" CARRA Registry is now complete and enrolled a total of 9,587 patients with the following diseases:
- Juvenile dermatomyositis (JDM)
- Juvenile Idiopathic Arthritis (JIA)
- Juvenile primary fibromyalgia syndrome (JPFS)
- Localized Scleroderma (LS)
- Multiple connective tissue disease (MCTD)
- Systemic lupus erythematosus (SLE)
- Systemic sclerosis (SS)
The new CARRA Registry began enrolling patients in the summer of 2015. Continuation of the CARRA Registry will support data collection on patients with pediatric-onset rheumatic diseases and will form the basis for future CARRA studies. To learn more about the new CARRA Registry and participating centers, visit: https://carragroup.org/