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

项目摘要/摘要 RTI International建议作为NHLBI/NIMHD Sickle的数据协调中心(DCC) 细胞疾病实施联盟(SCDIC)促进和支持SCDIC的研究工作 通过以下措施改善患有镰状细胞病(SCD)的青少年和成年人的健康和福祉 在美国，医疗保健的障碍存在于多个层面。作为SCDIC的DCC，RTI 将通过提供后勤、数据来促进科学协作以实现计划目标 管理和统计支持；通过帮助设计、开发和管理 需求评估、SCD登记处和个人执行研究协议；并通过建立 研究行动，以有效地监测研究，并收集、管理、分析、报告和传播 结果数据。我们将利用RTI作为临床研究网络DCC的35年经验来 向财团提供科学专业知识以及行政和业务支持，帮助其发展和 评估多模式、多部门干预措施，以提高青少年和成人SCD的发病率 接受合格医生的常规初级护理。我们的领导团队将为SCDIC提供 需要科学专业知识和合理的建议来开发基于严谨 研究方法、方案设计和数据分析。 T RTI团队包括SCD、实施科学、注册中心建设和联盟方面的专家 管理层。我们的团队将由Barbara Kroner博士和Lucia Rojas Smith博士领导。克朗纳博士是一位 在NIH资助的疾病预防控制中心建立了PI，包括超过3,600人的多中心NHLBI GenTAC登记 患有遗传性综合症或疾病的患者，有患主动脉瘤的风险。罗哈斯·史密斯博士 拥有实施科学方面的专业知识，并担任人权事务管理局资助的Sickle的评估负责人 细胞疾病治疗示范项目国家协调中心。克朗纳博士将提供 对SCD注册处的科学领导并管理整个DCC操作；Rojas Smith博士将提供 科学地领导需求评估和实施研究。他们将得到五个人的支持 专家：Donald Brambilla博士(生物统计学家)、Kathryn Hassell博士(血液学家)、Kim Smith-Whitley博士(儿科 血液学家)、布莱恩·韦纳(实施科学家)和约瑟夫·特尔费尔(心理社会研究人员和PI 专门针对SCD的多点干预计划)。这支团队共同将所需的专业知识带到 支持和指导SCDIC研究项目的方方面面。

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.