The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has been awarded a three-year $2.4-million grant from the U.S. Centers for Disease Control and Prevention (CDC), which will help efforts to understand the long-term outcomes of children and adolescents with lupus or other rheumatic diseases.
The grant is meant to accelerate research by supporting the CARRA Registry, an observational registry that collects clinical data and additional information from people diagnosed with rheumatic diseases in their childhood.
In addition to determining the long-term outcomes of these children and adolescents, the registry also aims to understand the safety and effectiveness of medications used to treat childhood-onset rheumatic diseases, and to identify patients eligible for future studies.
“We are thrilled to receive this funding from the CDC that will further our mission of advancing meaningful research in pediatric rheumatic diseases,” Aimee Hersh, MD, a pediatric rheumatologist at the University of Utah, and chair of the CARRA Lupus Committee, said in a news release.
“Our goal is to recruit more than 1,000 pediatric lupus patients who will be followed in the CARRA Registry for at least 10 years,” Hersh added.
Lupus affects both adults and children, but the disease is often more aggressive and severe in children, with more intense symptoms, which can significantly affect their quality of life and survival.
CARRA established a partnership with the Lupus Foundation of America in 2017 to bring awareness and research to childhood lupus. The foundation played a critical role in securing the grant by working with Congress to increase funding for a lupus registry, with a particular focus on childhood lupus.
“The funds to support this CDC grant to CARRA are a direct result of the tireless efforts of lupus warriors who participate in year-round Lupus Foundation of America advocacy initiatives,” said Stevan W. Gibson, the foundation’s president and CEO. “Within the past five years alone, foundation-led advocacy efforts have generated a half-billion dollars for lupus research.”