NHLBI Awards Grants to Help Improve Health Outcomes for Teens, Adults with Sickle Cell Disease

Program aims to identify barriers and close gaps that limit patient access to consistent, quality care

WHAT: The National Heart, Lung, and Blood Institute (NHLBI) recently awarded nearly $36 million in grants to help improve the quality of health care for U.S. teens and adults with sickle cell disease. The grants are the first of their kind dedicated to testing strategies that could boost health outcomes for this group of young adults. The grants were awarded to eight clinical sites across the country as part of the Sickle Cell Disease Implementation Consortium (SCDIC) project. Each grant is scheduled to run six years.

Another $6 million was awarded to establish an SCDIC Data Coordinating Center, which will support the research efforts of the SCDIC project. The project also includes funding and support from the National Institute on Minority Health and Health Disparities (NIMHD).  NHLBI and NIMHD are parts of the National Institutes of Health. 

While most U.S. children with sickle cell disease survive to adulthood, the transition from pediatric to adult care is often challenging.  Researchers are already familiar with some of the barriers: frequent use by patients of emergency rooms instead of clinics, poor follow-up after hospital discharges, and limited access to hydroxyurea—an FDA-approved drug that helps boost survival and reduce pain. Other barriers to care are less clear, however.

The grants will support the work of researchers who will develop and test the effectiveness of strategies appropriate for the communities their clinical sites serve, whether they are urban, suburban, or rural. The researchers hope the project, which will entail collaboration among the sites, will lead to more effective evidence-based guidelines for administering sickle cell care and ultimately help save lives in this population of great need. 

The following are the new grant recipients:

• University of Illinois at Chicago, Chicago
• St. Jude Children’s Research Hospital, Memphis, Tennessee
• Washington University, St. Louis
• Georgia Regents University, Augusta
• Medical University of South Carolina, Charleston
• Icahn School of Medicine at Mount Sinai, New York City
• Duke University, Durham, North Carolina
• Children’s Hospital & Research Center at Oakland, Oakland, California

The SCDIC Data Coordinating Center is:

• Research Triangle Institute, Research Triangle Park, North Carolina

WHO: W. Keith Hoots, M.D., Director, Division of Blood Diseases and Resources, NHLBI, is available to comment on the sickle cell disease and the new grant awards.

CONTACT: For more information or to schedule an interview, please contact the NHLBI Office of Science Policy, Engagement, Education, and Communications at 301-496-5449 or nhlbi_news@nhlbi.nih.gov.

NOTE TO EDITORS:  September is National Sickle Cell Awareness Month.