Research & Screening / National Coordinating and Evaluation Center (NCEC)

National Coordinating and Evaluation Center (NCEC)

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:

1. Increase the knowledge about sickle cell disease for families of babies identified with sickle cell disease, as carriers of sickle cell disease or other hemoglobinopathies, and of their providers who are served by the HRSA funded sickle cell disease community-based programs. In particular, provide outreach and education to emerging populations such as Hispanic Latino, Caribbean, African, Asian and multi-racial populations.
2. Strengthen partnerships between HRSA funded sickle cell disease community-based programs and partners, with particular emphasis on state newborn screening programs.
3. Improve the quality of sickle cell disease, newborn screening and carrier follow-up activities of the HRSA funded sickle cell disease and newborn screening community-based programs by building on activities/resources/tools developed under the previous sickle cell disease and newborn screening grant cycles. Build upon the existing minimum data set to add data on carrier follow-up

These goals and objectives are accomplished through activities in 5 priority areas:

1. Educational Material Development and Dissemination
2. Data Development, Expansion, Use and Evaluation
3. Strengthening Carrier Status Follow-up with State Newborn Screening Programs and the Association of Maternal and Child Health Programs (AMCHP).
4. Partnership Development and Enhancement
5. Information Exchange with Grantees.

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

Contacts

Natasha Thomas, Project Logistics and Coordination, 410-528-1555
Eileen Miller, Project Grants Manager, 336-334-9814