The College of American Pathologists (CAP) submitted comments on the ONC’s draft USCDI+ Sickle Cell Disease data element lists, which are intended to support more consistent and interoperable exchange of health information for patients with sickle cell disease. The data element lists focus on care coordination during treatment and during emergency care situations.
Our recommendations:
- Ensure laboratory medicine data standards are incorporated into the design of genomic and transfusion-related data elements.
- Clarify data element definitions that could create confusion between molecular genotypes and serological blood typing.
- Add applicable data standards for key genomic and transfusion-related data elements.
Pathologists and laboratories play an important role in diagnosing and managing sickle cell disease through diagnostic testing, result interpretation, and transfusion-related care. We emphasized that laboratory, genomic, and transfusion information must be represented accurately and exchanged consistently across health information systems.
Bottom line: We support efforts to improve care coordination and data exchange for patients with sickle cell disease while ensuring laboratory data can be interpreted and used safely across care settings.