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Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Executive Summary

Sickle cell disease (SCD), an inherited blood disorder that is more prevalent in individuals of African and Latinx/Hispanic descent, affects approximately 100,000 Americans. People living with SCD experience acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body, requiring providers who are knowledgeable and understanding. 

The Health Resources and Services Administration launched the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program more than ten years ago. As we push to enhance access to services for people living with Sickle Cell Disease and improve and expand provider and patient education, NICHQ worked with five regional teams from across the country to deliver a comprehensive report to Congress detailing outcomes from the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP), a Model Protocol, and Compendium of Tools and Resources consisting of resources to improve care of people living with sickle cell disease are enclosed.

This executive summary provides an overview of the Program, highlighting core Program partners, the Program's impact, and the three healthcare domains Regional Coordinating Centers worked to address. 

NICHQ submit our Report to Congress on September 29, 2021. Funding for this report was provided by the Health Resources and Services Administration. 

Read NICHQ's Report to Congress

NICHQ's Report to Congress is now available to download, which includes details of the Program, including data, Regional Coordinating Centers’ activities and recommendations for providers and clinicians.