HHS Office of Minority Health Announces $1 Million Award to Develop
National Sickle Cell Disease Data Collection System

October 1, 2020
Contact: Tony Welch

HHS Office of Minority Health Announces $1 Million Award to Develop
National Sickle Cell Disease Data Collection System

Washington, D.C. – The Office of Minority Health (OMH) at the U.S. Department of Health and Human Services (HHS) announced today an approximately $1,000,000 grant to the American Society of Hematology (ASH) to develop and implement a national sickle cell disease (SCD) clinical data collection platform.

The Sickle Cell Disease Clinical Data Collection Platform initiative will be led by ASH, the ASH Research Collaborative (RC) and the Learning Networks Program at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital. This initiative will leverage and enhance the ASH RC SCD Data Hub Program to serve as a nationwide SCD data collection platform and create a new SCD Learning Community. The platform will leverage longitudinal patient data to help track practice patterns, document and share best practices for improving care, facilitate research, and ultimately work to improve outcomes at a national level.

'HHS has made addressing sickle cell disease and improving the lives of the 100,000 patients affected by the disease in the U.S. a departmental priority,' HHS Assistant Secretary for Health ADM Brett P. Giroir, MD, said. 'The Office of Minority Health is taking an important step toward that goal by establishing a much-needed platform to collect clinical data that can help providers determine ways to improve care and boost research.'

In general, people with SCD receive less access to comprehensive team care than people with other genetic disorders, such as hemophilia and cystic fibrosis. Comprehensive SCD care centers have been established throughout the United States—mostly in large metropolitan areas, including at some Historically Black Colleges and Universities (HBCUs). However, many individuals living with SCD cannot access such centers. This OMH initiative establishes a shared data platform, where providers can document their experiences as well as those of their patients, and learn from other providers. Providers can also promote and share common clinical improvement goals across centers.

OMH will use the initiative to determine whether a standardized clinical data collection platform, shared across medical centers and other healthcare facilities, can serve as a central repository for analyzing data from large patient cohorts, recruiting patients for clinical trials, assessing adherence to evidence-based clinical guidelines, and identifying new areas for research.

'We have seen some success with this model in improving child health outcomes for diseases such as cystic fibrosis and cardiovascular disease,' said HHS Deputy Assistant Secretary for Minority Health, RADM Felicia Collins, MD, MPH. 'We are optimistic that we will demonstrate that a similar platform can provide the data needed to improve health care and health outcomes for people living with sickle cell disease, a condition that disproportionately impacts African Americans.'

The funding amount for FY 2020 is $999,563, and the project period is 2020-2022.


For additional information on SCD, visit: minorityhealth.hhs.gov/sicklecell/. For more information on this grant, visit: minorityhealth.hhs.gov.