About the Sickle Cell Disease Newborn Screening Program

The Sickle Cell Disease Newborn Screening 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. The National Initiative for Children’s Healthcare Quality, in partnership with the Sickle Cell Disease Association of America and Boston Medical Center, serves as the National Coordinating and Evaluation Center for this program.  

The National Coordinating and Evaluation Center organizes 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, NICHQ coordinates, monitors and distributes data and best practices across all network teams and nationwide. In partnership with state newborn screening programs, grantee network teams will also work with HRSA Regional Genetic and Newborn Screen Service Collaborative and other partners to improve access to and quality of newborn screening follow-up activities. 

Project Aim:

The overarching goals of the Sickle Cell Disease Newborn Screening Program are three-fold:

  1. Improve the follow-up of individuals detected through newborn screening with sickle cell disease (SCD), sickle cell trait, and other hemoglobinopathies;
  2. Assure that individuals identified with SCD and other hemoglobinopathies receive the highest quality of health care and supportive services throughout their lifespan;  
  3. Assure that individuals with SCD, 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.

National Coordinating and Evaluation Center- NICHQ
Charles J. Homer, MD, MPH, Project Executive

Contacts

  • Suzette Oyeku, MD, MPH, Project Director, This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
  • Kate Vaughan, MSW, Senior Project Manager, This e-mail address is being protected from spam bots, you need JavaScript enabled to view it