Sickle cell disease (SCD), the most common inherited blood disorder in the United States, affects over 100,000 Americans, with about 1 in 12 African Americans carrying the gene. The disease is characterized as causing severe episodes of acute and chronic pain throughout an individual's life, and often causes severe anemia and greatly increased susceptibility to infections. Many people living with SCD suffer from a number of these complications and more, greatly decreasing their quality of living.
In 2020, the Office of the CTO and CODE, in partnership with the HHS Office of the Assistant Secretary for Health (OASH), co-hosted a virtual webinar and Roundtable on Leveraging Data to Address Sickle Cell Disease. The webinar engaged over 700 individuals, and the Roundtable convened over 70 expert stakeholders and patients in the SCD community to assess salient pain points and areas for improvement, including treatment options, access to informed care, and physician/patient trust. Roundtable participants successfully identified data resources, gaps, and strategies for data application that could help policymakers, healthcare providers, and other stakeholders improve the care of individuals who suffer from Sickle Cell Disease.
Insights from the Roundtable were used to inform the SCD Healthathon, hosted by HHS and Howard University’s 1867 Health Innovations Project. The Healthathon had participants use existing data to build prototypes and find solutions to challenges raised at the Roundtable with the goal of improving health outcomes.
FedScoop: Leveraging data to address Sickle Cell Disease