Advancing Sickle Cell Disease Care Through Collaboration: the HHS and ASH Registry Leaders' Roundtable Initiative.

Abstract

Access to robust data is essential to addressing complex problems for people living with SCD; however, current data sources have significant limitations (1). Manual data capture programs are highly curated but are challenging to scale, while claims or EHR-based databases scale rapidly but face challenges with reliability and validity. There have been limited coordinated efforts to address programmatic redundancies and minimize burden for clinicians, researchers, and patients. In 2022 and 2023, three Sickle Cell Disease (SCD) Registry Leaders Roundtable sessions were convened by the U.S. Department of Health and Human Services (HHS) in collaboration with the American Society of Hematology (ASH). HHS subsequently initiated development of an SCD-specific U.S. Core Data for Interoperability Plus program (USCDI+ SCD) (2). In this viewpoint, we argue that a strong framework for interoperability, linkages between existing data efforts, and targeted curation informed by clinical expertise are necessary components of a national SCD data infrastructure.