Data Coordinating Center for Sickle Cell Disease Implementation Consortium (SCDIC)

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PROJECT SUMMARY/ABSTRACT RTI International proposes to serve as the Data Coordinating Center (DCC) for the NHLBI/NIMHD Sickle Cell Disease Implementation Consortium (SCDIC) to facilitate and support the research efforts of the SCDIC to improve the health and well-being of adolescents and adults with sickle cell disease (SCD) by addressing the barriers to health care that exist at multiple levels in the United States. As the DCC for the SCDIC, RTI will facilitate scientific collaboration to achieve the program objectives by providing logistical, data management, and statistical support; by contributing to the design, development, and management of the needs assessment, the SCD Registry, and individual implementation research protocols; and by establishing study operations to efficiently monitor studies and to collect, manage, analyze, report, and disseminate the resulting data. We will draw on RTI's 35 years of experience as a DCC for clinical research networks to provide scientific expertise and administrative and operational support to the Consortium as it develops and evaluates multimodal, multisector interventions to improve the rate that adolescents and adults with SCD receive routine primary care from qualified physicians. Our leadership team will provide the SCDIC with the scientific expertise and sound advice needed to develop an innovative research program based on rigorous study methodology, protocol design, and data analysis. T he RTI team includes experts in SCD, implementation science, registry building, and consortium management. Our team will be headed by Drs. Barbara Kroner and Lucia Rojas Smith. Dr. Kroner is an established PI on NIH-funded DCCs, including the multicenter NHLBI GenTAC registry of more than 3,600 patients with a genetic syndrome or condition that puts them at risk for aortic aneurysms. Dr. Rojas Smith has expertise in implementation science and served as the evaluation leader for the HRSA-funded Sickle Cell Disease Treatment Demonstration Project National Coordinating Center. Dr. Kroner will provide scientific leadership to the SCD registry and manage overall DCC operations; Dr. Rojas Smith will provide scientific leadership to the needs assessment and implementation studies. They will be supported by five experts: Drs. Donald Brambilla (biostatistician), Kathryn Hassell (hematologist), Kim Smith-Whitley (pediatric hematologist), Bryan Weiner (implementation scientist), and Joseph Telfair (psychosocial researcher and PI of multisite intervention programs specific to SCD). Together, this team brings the needed expertise to support and guide all aspects of the SCDIC research program.