HHS Grant to Fund Learning Network for Sickle Cell Disease

The American Board of Pediatrics (ABP) applauds the Office of Minority Health at the U.S. Department of Health and Human Services (HHS) for awarding $1 million to the American Society of Hematology (ASH) and the Anderson Center at Cincinnati Children’s to support the development of a Learning Health Network focused on Sickle Cell Disease (SCD). The funding is for 2021 and is renewable in 2022.

The development of a learning health network for SCD was proposed by the ABP’s Family Leadership Committee several years ago. In follow up, the ABP Foundation hosted a meeting with key stakeholders in the SCD community. Data shared at the meeting demonstrated significant gaps in the care and outcomes of children with SCD. Last year, a coalition of representatives from the ABP, ASH, the American Board of Internal Medicine, the American Board of Emergency Medicine, the American Board of Family Medicine, and the American Academy of Pediatrics met with HHS representatives to discuss ways a national learning health network could advance the care and outcomes of SCD.

Learning health networks are multisite, practice-based clinical networks that use data for research and improvement. They involve collaborations among patients, families, clinicians, and scientists, who work together to collect data, share best practices, and spark innovation.

The learning health network model is based on work sponsored by the American Board of Pediatrics in 2003 to consider how to improve the health of populations of children at scale. The ABP has sponsored meetings to support various learning networks and other projects in the years since.
“Learning networks have resulted in improved care and outcomes for multiple populations of children and their families,” says Carole Lannon, MD, MPH, Senior Faculty Lead, Learning Networks Program, Anderson Center for Health Systems Excellence at Cincinnati Children’s, and Senior Quality Advisor for the ABP. 

See a post on the ABP blog about the learning network’s development from the perspective of a parent whose children have SCD