CARRA Granted $2.4M for Research Efforts to Determine Lifetime Outcomes of Children and Adolescents with Lupus

CARRA Granted $2.4M for Research Efforts to Determine Lifetime Outcomes of Children and Adolescents with Lupus

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.”

Patricia holds a Ph.D. in Cell Biology from University Nova de Lisboa, and has served as an author on several research projects and fellowships, as well as major grant applications for European Agencies. She has also served as a PhD student research assistant at the Department of Microbiology & Immunology, Columbia University, New York.
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Patricia holds a Ph.D. in Cell Biology from University Nova de Lisboa, and has served as an author on several research projects and fellowships, as well as major grant applications for European Agencies. She has also served as a PhD student research assistant at the Department of Microbiology & Immunology, Columbia University, New York.
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One comment

  1. Vicki Erisman says:

    My husband was diagnosed with SLE at age 12. He spent 367 days in JOHNS HOPKIN HOSPITAL IN 1968. Heis now 65 and his SLE is still active. He gets infusion of BENLYSTA every 28 days. Has had blood clots in legs go to his heart and triple heart bypass. To many other things to list. He is my hero. We also have a Son 42 with Multiple Scoliosis.

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