Sickle Cell Disease Treatment Demonstration Regional Collaborative Program: Quality Improvement and Performance Measure Data Collection

The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP) was reauthorized under the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018, 42 U.S.C. § 300b-5. The goals of the SCDTDRCP are to improve health outcomes in individuals with sickle cell disease (SCD); reduce morbidity and mortality caused by SCD; reduce the number of individuals with SCD receiving care only in emergency departments; and improve the quality of coordinated and comprehensive services to individuals with SCD and their families. The program funds five grantees to establish regional networks to provide leadership and support for regional and statewide activities in SCD. The grantees develop and establish systemic mechanisms to improve the treatment of SCD, by: 1) increasing the number of providers treating individuals with SCD using the National Heart, Lung and Blood Institute (NHLBI) Evidence-Based Management of SCD Expert Panel Report; 2) using tele-mentoring, telemedicine and other provider support strategies to increase the number of providers administering evidence-based sickle cell care; and 3) developing and implementing strategies to improve access to quality care with emphasis on individual and family engagement/partnership, adolescent transitions to adult life, and care in a medical home. Per the statutory requirement, the data collected will be used to evaluate the program and will be published in a report to Congress. The purpose of the data collection strategy is to evaluate the effectiveness of the SCDTDRCP and how the program can improve the coordination of service delivery for individuals with sickle cell disease (SCD), train health professionals to increase access to quality care, and collaborate with various stakeholders to optimize health outcomes for individuals with SCD. Data collected by the SCDTDRCP grantees will be summarized in a Report to Congress.

The latest form for Sickle Cell Disease Treatment Demonstration Regional Collaborative Program: Quality Improvement and Performance Measure Data Collection expires 2023-09-30 and can be found here.

The Sickle Cell Disease Treatment Demonstration Regional Collaborative Program Quality Improvement Data Collection Form

Federal Enterprise Architecture: Health - Health Care Services

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