National Coordinating and Evaluation Center (NCEC): Sickle Cell Disease (SCD) Community Programs (1 U93 MC 00217-01)

Funding Agency: MCHB/HRSA/DHHS

Total Amount: $800,000/per year for SCDAA

Percent Effort on Project: 35%

Funding Period: 09/2002 – 5/31/2011 (3 year cycles starting in 2005)

Role on Project: PI/Project Director and Principal Evaluator

Update: A competitive application was submitted on 01/15/2011 for a 4-year period at $800,000 per year. UNCG-CSCHRE will become the lead agency receiving 100% of the funding.

Project Description: Co-wrote the project proposal and wrote the project methodology. Based on principles of community-based program and assessment and using a team specifically trained to ‘fit’ the parameters of the NCEC: The major goals of this project are to serve as the national center for the coordination, monitoring and evaluation 15 funded community-based SCD projects who provide educational and counseling support to patients and families of infants positively screened for SCD or carriers of abnormal hemoglobins. The efforts of these first projects will serve as model for programs that will be funded in later stages of the initiative. Secondly, the purpose of this grant is to provide consultation and technical assistance to the community-based SCD organizations, consumer groups, state agencies, newborn screening programs, SCD treatment and research centers, and other agencies promoting newborn screening and other SCD-related education programs associated with the care of children, adolescents, and adults with SCD for health care workers, patients, and patient support groups in the community. A third goal is to link multiple service sites through a uniform set of databases for pilot-testing and implementation in order to enhance outreach, follow-up care, management and treatment with the aim of reducing early mortality and morbidity for those infants identified with a hemoglobinopathy. As PI/Project Director advocate for standard screening practices, support the efficacy of counseling provision for families; and work to establish a nationwide comprehensive SCD outreach program , standardized assessment tools and linked database all to begin in year one and to be implemented and sustained in subsequent grant periods.