CORE--CLINICAL

描述（由申请人提供）： 该核心项目将为圣路易斯的患者提供最先进的临床护理支持。 克里斯托弗儿童医院（SCHC），托马斯杰斐逊大学医院（TJU）和科赛尔儿童医院（KCH）作为玛丽安安德森综合镰状细胞中心的一部分。它还将为开展中心间合作临床试验所需的工作人员提供支持。核心工作人员将从各中心的儿科和成人人群中确定符合研究条件的患者，制定并实施促进患者入组的策略， 最大限度地减少临床试验中的患者脱落，并进行适当的数据收集，数据录入， 与统计和数据管理中心协调进行临床随访。核心 圣克里斯托弗医院的工作人员将协调和监督这些活动与临床 核心在托马斯杰斐逊大学医院和科塞尔儿童医院（路易斯维尔大学）。两个儿科项目的合并儿科SCD人群超过500人 患者中，289人患有SCD-SS。目前，费城TJU的成人课程有168个 患者，其中103例患有SCD-SS。预计会有更多儿童和成人患者 从肯塔基州计划，因为他们开始教育和推广活动， 丹皮尔博士的帮助SCHC的拟议活动包括进一步发展， 实施和传播共识区域临床SCD实践指南， 临床路径，以及为SCD患者父母提供的SCD儿童护理书。额外 KCH的活动将包括社区外展和教育活动， 患者，并提高该地区SCD患者的护理质量。TJU计划 将继续代表成年患者开展教育活动，并与工作人员合作 在SCHC和社区机构制定全面的过渡战略， 为患有SCD的当地青少年和年轻人提供的计划。

DESCRIPTION (provided by applicant): This core project will provide support for state-of-the-art clinical care for patients at St. Christopher's Hospital for Children (SCHC), Thomas Jefferson University Hospital (TJU), and Kosair Children's Hospital (KCH) as part of the Marian Anderson Comprehensive Sickle Cell Center. It will also support the staff necessary to conduct the Inter-Center cooperative clinical trials. Core staff will identify patients eligible for studies from the pediatric and adult populations at the various Center sites, develop and implement strategies to foster patient enrollment and to minimize patient dropout in clinical trials, and perform appropriate data collection, data entry, and clinical follow-up in coordination with the Statistical and Data Management Center. Core staff at St. Christopher's Hospital will coordinate and supervise these activities with the Clinical Cores at Thomas Jefferson University Hospital and at the Kosair Children's Hospital (University of Louisville). The combined pediatric SCD population of the two pediatric programs is over 500 patients, 289 of whom have SCD-SS. The current adult program at TJU in Philadelphia has 168 patients, of whom I03 have SCD-SS. Additional pediatric and adult patients are anticipated from the Kentucky program as they begin education and outreach activities with the assistance of Dr. Dampier. Proposed activities at SCHC include further development, implementation, and dissemination of consensus regional clinical SCD practice guidelines and clinical pathways, and a SCD childrens care book for parents of SCD patients. Additional activities at KCH will include community outreach and education activity to recruit new patients and to enhance the quality of care for SCD individuals in the area. The TJU program will continue educational activities on behalf of adult patients, and collaborate with the staff at SCHC and community agencies to develop a comprehensive transition strategy and program for local adolescents and young adults with SCD.