Childhood Arthritis and Rheumatology Research Alliance (CARRA)
The Lupus Foundation of America (LFA) has an ongoing partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Its purpose is to improve care for children and adolescents with lupus through joint initiatives of research, education and advocacy.
The LFA and CARRA conducted a survey to identify areas of greatest need in childhood lupus research and care. The areas include lupus nephritis (lupus kidney disease), clinical trials, biomarkers, neuropsychiatric lupus (lupus that affects the brain and nervous system), and refractory skin disease.
This first-of-its-kind study will help develop a research agenda for childhood lupus and create a roadmap to tackle each area one by one.
CARRA an investigator-led network that conducts collaborative research to prevent, treat, and cure pediatric rheumatic diseases. CARRA's goals are to understand all pediatric-onset rheumatic diseases; how to treat every patient most effectively and safely, and eventually find a cure. Learn more about CARRA.
In 2017, the Lupus Foundation of America committed to a multi-year partnership to support CARRA in the development of a childhood lupus research agenda. During the first year, CARRA and LFA administered a research prioritization survey. The survey identified the highest research priorities for childhood lupus among leading rheumatology, dermatology and nephrology clinicians and investigators engaged in care of children with lupus. The results were published on July 1, 2019, in the journal, Pediatric Rheumatology. The next step will be to develop a specific research agenda for childhood lupus.
Thousands of children and teens in the U.S. are living with lupus. In children, lupus tends to be more aggressive and severe than it is in adults. The symptoms are more intense, and the disease can have long-term effects on a child's growth, quality of life, and even how long they live. Approximately 20% of individuals with lupus develop the disease in childhood. International studies indicate that children with lupus have more pervasive and life-threatening organ involvement than adults. Up to 80% of children with lupus develop lupus nephritis (LN), resulting in higher mortality rates in childhood versus adult-onset lupus. Learn more about the impact of childhood lupus.
The Lupus Foundation of America is the first and only lupus organization with a dedicated commitment to childhood lupus research. We have been supporting researchers of childhood lupus since 2006. Our priorities include lupus nephritis (lupus kidney disease), neuropsychiatric lupus (lupus that affects the brain and nervous system), quality of life, and the transition to adult care. The partnership with CARRA is an outgrowth of the LFA's support for research on lupus in children and teens.
The Lupus Foundation of America will continue to prioritize childhood lupus research and provide updated on news and advancements in the field through our news bureau, Inside Lupus Research.