In the Battle Against Juvenile Arthritis, Organizations Find Two is Better Than One
The Arthritis Foundation and the Childhood Arthritis and Rheumatology Research Alliance (CARRA) announce collaborative partnership
ATLANTA – Today, children and families living with juvenile arthritis and other childhood rheumatic diseases can find new hope in the fight against the disease. Two leading organizations, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the Arthritis Foundation, have announced a partnership to align scientific agendas and expand research in the area. The move marks an important milestone in the fight against juvenile arthritis and other pediatric rheumatic diseases, which affect an estimated 300,000 U.S. children.
“The most important aspects of this collaboration are the implications for patients and families living with juvenile arthritis today,” said Ann Palmer, president and CEO of the Arthritis Foundation. “CARRA and the Arthritis Foundation have worked together for more than a decade to improve treatment and outcomes for children living with juvenile arthritis and other childhood rheumatic diseases. However, this new collaboration goes beyond providing grants and research funding. It will ensure we are aligned on various levels to meet the needs of these children and their families.”
"Despite new medications, juvenile idiopathic arthritis and other pediatric inflammatory disorders profoundly impact the lives of affected children and families. They have to deal with disease symptoms, treatment regimens and medication side effects, as well as growth abnormalities and eye involvement causing changes to family life and decreasing quality of life,” says Laura Schanberg, MD, Professor of Pediatrics, co-chief of pediatric rheumatology at Duke University Medical Center, CARRA president and a principal investigator for the CARRA Registry. “The Arthritis Foundation has supported CARRA’s efforts to address these issues since CARRA was formed. We are excited to formalize this relationship and work together on clinical and translational research.”
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 sustain and enhance research in pediatric rheumatologic diseases
- Develop and implement comparative effectiveness studies
- Increase community engagement in research, particularly patients and families
The first step in managing the Arthritis Foundation and CARRA partnership will be the establishment of a joint steering committee with representation from both organizations to guide the research agenda going forward. This alignment will streamline and clarify the process for raising funds for pediatric clinical research. Organizations, individuals, or families can now make donations for pediatric research knowing that the research agendas are unified.
A strong example of this collaboration in action is the CARRA Registry, a keystone project now supported by the Arthritis Foundation, whose mission is to collect long-term information on the epidemiology, diagnoses, treatments, outcomes and impact of pediatric rheumatic diseases. Schanberg stated, “The CARRA Registry collects comprehensive data and serves as a valuable resource for patients, physician-scientists, and other researchers seeking to learn more about the impact, course and outcomes of arthritis and other rheumatic diseases in children, and contributes to the development of better diagnostic and treatment approaches.”
To learn more about juvenile arthritis and other pediatric rheumatic diseases, please visit www.kidsgetarthritistoo.org.
CARRA is a North American organization of more than 400 pediatric rheumatologists, researchers and research coordinators at more than 100 sites (95% of all pediatric rheumatologists/sites in North America) who are working together to find treatments for JIA and other pediatric rheumatic diseases in children. CARRA was founded in 2002 and operates as a 501c3 nonprofit organization. The CARRA Registry is a cornerstone of CARRA and provides disease and treatment data on children with a variety of rheumatic diseases. CARRA aims to make it possible for all affected children in North America to have the opportunity to participate in meaningful and high quality clinical and translational research. CARRA researchers have been awarded over $40 million in research funding over the last 10 years. The CARRA Executive team includes Dr. Schanberg, Yukiko Kimura, MD, Hackensack University Medical Center; Norman Ilowite, MD, Montefiore Medical Center, and Robert Fuhlbrigge, MD, PhD, Children’s Hospital Boston.
About the Arthritis Foundation:
The Arthritis Foundation (www.arthritis.org) is the largest and most trusted nonprofit organization dedicated to addressing the needs and challenges of those living with arthritis, the nation’s leading cause of disability. Since 1948, the Foundation has remained committed to leading groundbreaking research for better treatments and a cure; fighting for patients’ access to affordable and effective health care; and providing trusted information and resources to the more than 50 million adults and 300,000 children living with the disease.