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), an investigator-led network that conducts collaborative research to prevent, treat, and cure pediatric rheumatic diseases. Its purpose is to improve care for children and adolescents with lupus through joint initiatives of research, education and advocacy.

Thousands of children and teen 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.

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Through its partnership with CARRA, the LFA supported a three-year research project, starting in 2017. During the first year of the research partnership the LFA and CARRA conducted a survey of healthcare professionals to identify areas of greatest need in childhood lupus research and care. The areas include lupus nephritis (lupus-related 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. Read our media release about the results.

Year two of the initiative began the process of conducting expert interviews to further characterize barriers and facilitators in childhood lupus research related to the year one survey results. The study found that more than 1 in 3 people with childhood onset lupus (cSLE) have lupus nephritis (LN, lupus-related kidney disease), finding 74% of people with cSLE developed LN within 1-year of diagnosis. The study also found children of Black race are more likely to experience worse short-term outcomes. Read more in our 2020 American College of Rheumatology conference recap.

Ongoing work from year three is focused on two projects through CARRA’s Lupus Nephritis Workgroup related to prescribed treatment regimens (cyclophosphamide) for LN and using rigorous and robust analysis of the current CARRA registry data to test principles of lupus nephritis. These projects will show direct impact on CARRA’s ability to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases such as SLE and lupus nephritis.

Next Phase of Support

In 2021 the LFA announced its continued support of CARRA’s critical research on childhood lupus with another grant for the project’s next phase. This will focus on two research priorities:

In-depth interviews with cSLE patients and caregivers to determine the research areas most important to them.
Continuation of the LN research conducted previously to measure blood levels of the treatment cyclophosphamide in two different doses. The results from this research may inform if children can take a lower dose of this medication.

Partnering Beyond Research

In addition to supporting the critical research efforts of CARRA and pushing the needle forward in childhood lupus research, the LFA has been proud to work hand-in-hand with the organization to further connect with children with lupus and their caregivers, providing valuable resources and education. This includes attending CARRA-led workshops, inviting CARRA experts to participate in The Expert Series to share knowledge and resources, and working in partnership with CARRA on youth programming for the LFA’s National Lupus Advocacy Summit. The LFA and its lupus advocates also played a key role in securing a three-year $2.4 million federal grant from CDC to CARRA to support CARRA’s natural history studies to determine the lifetime impact of lupus on children and teens who are living with the disease.

The LFA is also excited to be a part of CARRA’s new youth education workgroup - more information coming soon.