RDCRC Administrative Unit

同种异体血细胞移植罕见病后免疫调节紊乱的临床研究 该联盟(RDCRC)的总部将设在弗雷德·哈钦森癌症研究中心。的PI 该计划由医学硕士斯蒂芬妮·J·李博士和医学博士保罗·马丁共同负责 联合体的领导和管理，以及来自联合- 调查员，科学咨询委员会，生物标志物咨询组，培训主任，患者代言人 组织和数据管理协调中心(DMCC)。李博士和马丁博士都将 代表财团参加所有面对面的网络会议。 将成立一个独立的数据安全和监测委员会来监督临床试验。Dr。 巴里·斯托勒将担任该计划的生物统计学家，保罗·马丁博士将担任翻译联络人。 与普通临床研究中心(GCRC)/临床和翻译科学奖的互动 (CTSA)单位和DMCC将根据需要在联合体的多个层面上完成 科学目标。 沟通对财团的成功至关重要。每月电话会议，由 预先分发的议程和号召后的会议记录和行动项目，将提供结构、监督和经常 协作机会。这种通信方法已被证明是一种非常有效的 有效的协作工具。每月纪要分发给所有参与调查的调查人员、实习生、 DMCC工作人员、NIH项目官员和咨询小组。财团各组成部分的年度报告将 将由科学咨询委员会和美国国立卫生研究院/罕见病办公室审查。在……第三年 资金，将进行半天的面对面审查，以评估过去的进展和未来的方向 财团。

Administration of the Immune Mediated Disorders after Allogeneic HCT Rare Diseases Clinical Research Consortium (RDCRC) will be based at the Fred Hutchinson Cancer Research Center. The PI for the program, Dr. Stephanie J. Lee, MD MPH, and the Co-Pi, Dr. Paul Martin, MD, are responsible for the overall leadership and administration of the Consortium, with substantial interaction and input from the Co- Investigators, Scientific Advisory Board, Biomarkers Advisory Group, Training Directors, Patient Advocacy Organizations and Data Management Coordinating Center (DMCC). Both Dr. Lee and Dr. Martin will participate in all in-person network meetings representing the Consortium. An independent Data Safety and Monitoring Board will be established to oversee the clinical trials. Dr. Barry Storer will serve as the Program biostatistician, and Dr. Paul Martin will be the Translational Liaison. Interactions with the General Clinical Research Centers (GCRC)/Clinical and Translational Science Awards (CTSA) units and the DMCC will be at multiple levels of the Consortium as required to accomplish the scientific goals. Communication is critical to the success of the Consortium. Monthly conference calls, supported by a pre-circulated agenda and post-call minutes and action items, will provide structure, oversight and frequent collaborative opportunities. This method of communication has proven to be an extremely efficient and effective collaborative tool. The monthly minutes are circulated to all participating investigators, trainees, DMCC staff, NIH program officers, and advisory groups. Annual reports of the Consortium components will be reviewed by the Scientific Advisory Board and NIH/Office of Rare Diseases. During the third year of funding, a half-day, in-person review will be conducted to evaluate the past progress and future direction of the Consortium.