Recommendations for improving care for people with sickle cell disease.
This report to Congress synthesizes the results of four years of the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), one of two federal programs that aim to improve the quality of care that individuals with sickle cell disease receive in the United States. The SCDTDP (one part of NICHQ's Working to Improve Sickle Cell Healthcare project) consists of multiple demonstration sites across the country as well as a National Coordinating Center.
For the past four years, NICHQ and its partners supported these grantees using collaborative learning and quality improvement. This approach entailed regularly collecting data and sharing results and best practices among the grantees, which provided extensive opportunities for learning. This experience forms the basis for our recommendations in this congressional report.
The recommendations address several different levels of action:
- Recommendations for clinical delivery and public health programs
- Recommendations for the design or re-design of the Sickle Cell Disease Treatment Demonstration Program
- Recommendations for broad health policy