Sickle Cell Disease Newborn Screening Program
The Project
The Sickle Cell Disease Newborn Screening Program operates alongside the Sickle Cell Disease Treatment Demonstration Program. This program aims to improve follow-up care for those who are identified through newborn screening and other screening approaches to have sickle cell disease, sickle cell trait and other hemoglobin disorders. NICHQ, the Sickle Cell Disease Association of America and the Boston Medical Center will serve as the National Coordinating and Evaluation Center for this program. The National Coordinating and Evaluation Center will organize the work of the regional newborn screening grantee network teams which include federally qualified community health centers and other primary care sites, comprehensive sickle cell treatment centers and community-based organizations. As the National Coordinating and Evaluation Center, we will coordinate, monitor and distribute data and best practices across all network teams and nationwide. In partnership with state newborn screening programs, these grantee network teams will also work with HRSA Regional Genetic and Newborn Screen Service Collaboratives and other partners to improve access to and quality of newborn screening follow-up activities.
Project Timeline
This project will run from June 2011 to May 2015.
Project Goals
- Improve the follow-up of individuals detected through newborn screening and other screening approaches with sickle cell disease, sickle cell trait, and other hemoglobinopathies
- Assure that individuals identified with sickle cell disease and other hemoglobinopathies receive the highest quality of health care and supportive services throughout their lifespan
- Assure that individuals with sickle cell disease, trait and other hemoglobinopathies—including those in “emerging populations”—receive appropriate education and counseling to enable them to make informed health-related decisions, including, but not limited to, those related to reproductive choices
Status and Milestones
NICHQ is pleased to share that six grantee network teams in the following states: Illinois, Massachusetts, New York, Ohio, Pennsylvania and Tennessee have been selected to participate in this program. In early November 2011, these teams met along with grantees from the Sickle Cell Disease Treatment Demonstration Program for the first learning session of the Hemoglobinopathy Learning Collaborative. These teams will work collaboratively to develop and share best practices on such areas as care coordination, medical home for adults and children, transition of care and provision of recommended care for individuals living with sickle cell disease across the lifespan.
Resources
- Learn more about Sickle Cell Disease
- Visit the National Coordinating and Evaluation Center's website
- Read a press release about this project
- Read about NICHQ's new National Sickle Cell Disease Treatment Demonstration Program.
- Learn more about the US Department of Health and Human Services Sickle Cell Disease Initiative. See fact sheet.
- Management of Children with Sickle Cell Disease: A Comprehensive Review of the Literature (NICHQ Faculty Patricia Kavanagh and C. Jason Wang, Contributors)
