HRSA Sickle CellDisease Newborn Screening Demonstration Program

NBS Program: In 2002, Sickle Cell Disease Association of America (SCDAA) and the Maternal and Child Health Bureau (MCHB) of HRSA began a joint 6-year effort entitled the National Sickle Cell Disease and Newborn Screening Program (SCD NBS). The program participants are 17 hospitals, community (CBOs) and state grantees and one National Coordinating Center. The aim of the national SCD NBS is to: a) support the grantees in the development and maintenance of partnerships with State Title V and NBS programs and State SCD programs; b) enhance the follow-up component of State SCD screening programs; and c) work to enhance innovative projects that provide SCD-related education, SCD carrier counseling, and support services. This program has so far addressed: a) Challenges with NBS follow-up efforts for sickle cell and other hemoglobinopathies (i.e., parent & provider education needs); b) Partnership gaps; and c) Insufficient documentation about the effectiveness of what is being done to improve follow-up of NBS. The presentation will include discussion of the above information, relevant lessons learned and the unique challenges of the formative work guiding the current and future activities of this HRSA-funded work.