Funding agency: Department of Health and Human Services/HRSA/MCHB
Total Amount: $850,000 per year/4 years
Percent Effort on Project: 20% per year
Funding Period: 06/01/2007 – 02/28/2011
Role on Project: Principal Investigator/Program Director (Sub-Contract to Research Triangle International (RTI))/ Qualitative Researcher (10/2010 – 2/28/2011)
Project Description: The goal of the SCDTDP is to develop and establish infrastructure and partnerships to enhance the prevention and treatment of Sickle Cell Disease (SCD) and to eliminate health disparities for individuals with SCD. Additionally, to prevent mortality from and morbidity of SCD. The objectives of the project are to: a) Improve and expand patient and provider education; b) Improve the continuity and coordination of service delivery for individuals with SC; c) Provide coordinated, comprehensive, culturally accessible and family-centered care for individuals with SCD; and d) Improve genetic counseling and testing; and d) Provide state of the art treatment, patient and family support and health promotion for individuals with SCD. Four grantee ‘networks’ have been funded (AL, OH, IL, NC) to carry out the work of the program (SCDTDP). The networks are comprised of Federally-qualified health centers (FQHCs), sickle cell disease centers, university health centers, and community based sickle cell disease support organizations. The NCC-RTI, its partners and consultants are funded to (1) [as part of its evaluative function] collect, coordinate, monitor, analyze and distribute data, best practices and findings regarding the activities of the demonstration program, (2) identify a model protocol for the prevention and treatment of complication of Sickle Cell Disease, (3) identify educational materials regarding the prevention and treatment of complications of Sickle Cell Disease, and (4) prepare a final report on the efficacy of the demonstration program. The PI/ Project Director (PD provides overall direction for the project consistent with HRSA’s objectives, the authorizing legislation, and the recommendations of the Oversight Committee (OSC) and other stakeholders. In addition, PD provides guidance for the technical activities of the National Coordinating Center (NCC-RTI) (including use of the PD’s evaluation, community outreach and partnership and inherited blood disorders research expertise) and maintain regular communication with the Grantees, HRSA, RTI and its partners, Chair the Grantee meetings, and communicate recommendations from the Executive Committee (EC) to HRSA. The PD assists in assessing the capabilities of the Grantees, provide technical assistance, and monitor the progress of the Networks. Qualitative work is conducted during close-out 10/2010 – 2/2011.