The Sickle Cell Disease and Newborn Screening Program (SCD-NBS) is comprised of 17 national funded community based sickle cell disease (SCD) projects located in NY (2), AL, GA, NC (2), IL, TN, AR, FL (2), MO, PA (2), OH, CA (2) and the National Coordinating and Evaluation Center - Sickle Cell Disease Association of America project (NCEC-SCDAA).
The community-based SCD projects partner with State newborn screening programs, comprehensive sickle cell treatment centers, and health care professionals to provide support to infants screened positive for SCD and trait and their families. The projects work cooperatively and with the SCDAA-NCEC to implement a model program of SCD carrier follow-up to include notification, extended family testing, counseling and education of affected individuals and families
The Sickle Cell Disease and Newborn Screening Program is administered by the Genetic Service Branch of the Division of Services for Children with Special Health Needs in Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB). For more information on MCHB programs, visit the Bureau's Web site at www.mchb.hrsa.gov.
A need exists to coordinate and implement genetic services for newborns with Sickle Cell Disease (SCD) and for parents of carriers to receive accurate information through education and counseling. Newborn Screening (NBS) follow-up efforts have been problematic and a disparity exists for newborns in underserved and at risk communities.
The Sickle Cell Disease Association of America (SCDAA) serves as the National Coordinating and Evaluation Center (NCEC) for the projects of the NBS SCD initiative of HRSA/MCHB pursuing goals that are threefold:
Overall coordination of grantees is accomplished by means of a Steering Committee made up of a designee from each grantee and chaired by the Project Director. The NCEC activities are coordinated by the Project Director in concert with the SCDAA. A five member Monitoring and Oversight Committee serves as a resource for the development of policies and procedures that guide the NCEC.
Evaluation of the efforts of the NCEC involve use of the Integrated Model of Community-Based Evaluation developed by the Project Director, with both performance monitoring and process evaluation techniques utilized, to measure the achievement of project goals and objectives at both the NCEC and grantee levels.
National Coordinating and Evaluation Center-SCDAA
Joseph Telfair, MSW/MPH, DrPH, Project Director
Natasha Thomas, Project Logistics and Coordination, 410-528-1555
Eileen Miller, Project Grants Manager, 336-334-9814