While most children with sickle cell disease survive to adulthood, the transition from pediatric to adult care is often challenging. There are barriers such as frequent use of patients going to emergency rooms instead of clinics, poor follow-up after hospital discharges, and limited access to hydroxyurea a drug approved by FDA to help boost survival and reduce pain that may still exist.
The National Heart, Lung, and Blood Institute (NHLBI) www.nhibi.nih.gov within NIH www.nih.gov recently awarded nearly $35 million in grants to help improve the quality of healthcare for teens and adults with sickle cell disease.
The grants were awarded to eight clinical sites across the country as part of the Sickle Cell Disease Implementation Consortium (SCDIC) project underway and is scheduled to run six years.
The clinical sites awarded grants include University of Illinois at Chicago www.uic.edu, St. Jude Children’s Research Hospital www.stjude.org, Washington University St. Louis http://medicine.wustl.edu, Augusta University www.augustaedu, Medical University of South Carolina www.musc.edu, Icahn School of Medicine at Mount Sinai http://icahn.mssm.edu, Duke University www.duke.edu, and Children’s Hospital & Research Center www.childrenshospitaloakland.org in Oakland.
The grants will help researchers develop and test the effectiveness of strategies appropriate for the communities where their clinical sites are located, whether they are urban, suburban, or rural. To help collaboration and communication among clinical sites, another $6 million was awarded to establish the SCDIC Data Coordinating Center to support the research efforts of the SCDIC project.
The Data Coordinating Center will be located at Research Triangle Institute, Research Triangle Park, in North Carolina. This project includes funding and support from NIH’s National Institute on Minority Health and Health Disparities (NIMHD) www.nimhd.nih.gov.