Rho Federal Systems Division, Inc. (RhoFED), located in Chapel Hill, North Carolina, proposes to continue to serve as the Statistics and Data Management Center (SDMC) for the Comprehensive Sickle Cell Centers (CSCC) program. The SDMC will act as a coordinating center in support of collaborative clinical studies, local basic and clinical research, and activities to promote optimal communication among CSCC participants and the NHLBI Project Office. These studies will focus on the most promising therapeutic modalities for sickle cell disease. The primary goals of the coordinating center are to act as central point of communication for the day-to-day activities of the study group, provide epidemiological and statistical collaboration in the scientific elements, and provide the tools and support to ensure that the data generated by the clinical sites are of highest quality. RhoFED considers the following four aims to be essential in meeting the operational and scientific requirements of the project: a) Provide data management, statistical leadership, and clinical operations management support for common clinical protocols for the CSCC program; b) provide statistical support for all research projects within the CSCC program; c) develop, implement, and maintain web-based information technology to facilitate communication across facilities within the CSCC program and secure data entry and data management for the collaborative clinical studies; d) maintain, expand, and improve the existing CSCC program common patient database with particular emphasis on incorporating data on the social and financial burden of living with sickle cell disease and data related to health services utilization, health outcomes, and quality of life.
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