The Lupus Foundation of America (LFA) is proud to extend its continued partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA), providing a new round of funding for ongoing research into childhood-onset lupus. LFA has partnered with CARRA on its research efforts since 2017, initially with a three-year grant supporting research to improve care for children and adolescents with lupus through collaborative research.
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. LFA’s 2021 renewed one-year grant will ensure the critical research momentum into childhood-onset lupus continues. This year, the partnership will begin a new research phase focused on two priority areas:
- Hearing from Children and Caregivers: CARRA and LFA want to ensure the perspectives of patients and families is reflected in the research. Similar to the initiative’s earlier qualitative studies, in-depth interviews of around 20 children and adolescents with lupus and 20 caregivers will determine which research areas are most important from their points of view.
- Further Understanding Lupus Nephritis Treatment in Children: Additional funding will build onto the initiative’s lupus nephritis (LN, lupus-related kidney disease) research from the previous years. The next study will assess how the LN drug cyclophosphamide is metabolized by children with lupus at different doses and help guide clinicians’ medication dosing decisions in the future.
LFA is excited to carry this meaningful joint effort forward and would like to thank the Lupus and Allied Diseases Association Inc. for their generous support of the next phase of CARRA’s research. Learn more about LFA’s partnership with CARRA.
Looking Back: LFA-CARRA Research Efforts
In 2017, LFA provided a three-year grant to support CARRA’s ongoing research into childhood-onset lupus. During the first year, CARRA and LFA worked together to survey leading medical experts and clinicians to identify the most urgent and unmet needs in childhood-onset lupus:
- lupus nephritis
- clinical trials
- neuropsychiatric lupus (lupus that affects the brain and nervous system)
- refractory skin disease (disease that is not responsive to standard treatment)
The results were published in the journal Pediatric Rheumatology in July 2019, and LFA and CARRA have since conducted further expert interviews to better understand the research challenges and opportunities within each priority area. In 2020, that research resulted in a global call for pediatric clinical drug trials, biomarker research and greater cooperation across sectors to advance care and treatment for childhood-onset lupus.
CARRA’S LFA-funded research has also helped shed light on the significant connection between childhood-onset lupus and kidney health risk. Another collaborative study revealed more than 1 in 3 people diagnosed with lupus during childhood have LN, finding 74% of people with childhood-onset lupus developed LN within 1-year of diagnosis. The study also found children of Black race were more likely to experience worse short-term outcomes related to the kidney disease.
Additionally, LFA funding has supported two projects through CARRA’s Lupus Nephritis Workgroup focused on LN treatment regimens and improving understanding of LN in the pediatric population. Nearly 60% of children with lupus develop LN, resulting in higher mortality rates in childhood versus adult-onset lupus. Improving disease outcomes is imperative, and LFA’s partnership with CARRA is helping uncover new insights and answers.
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