Administrative unit - Autonomic Rare Diseases Clinical Research Consortium

监督委员会。自主神经罕见疾病临床研究联盟主任，医学博士大卫罗伯逊，向范德比尔特医学院代理院长杰弗里R。巴瑟医学博士，博士Robertson博士从4个联合体地点的负责人那里获得投入（见上图）。监督委员会的科学投入将通过电话会议传达。在本提案的准备过程中，我们每周召开电话会议，如果我们的RDCRC得到资助，我们计划继续每月召开电话会议。此外，监督委员会的调查员将每年举行两次面对面会议 在美国神经病学学会（春季）和美国自主学会（秋季）科学会议期间。监督委员会将审查科学进展、招聘、成果、新的发展， 试点提案、研究金申请人以及联合会管理的所有方面。一些问题，如 选择支持的试点项目和选择资助的研究金申请人，必须通过协商一致， 联合体监督委员会，以便以公平和透明的方式部署资源。当 在适当的情况下，该委员会可以建议改变研究方向和资源分配。 指导（外部咨询）委员会。指导委员会还将直接与 项目主任和相关调查人员，如果有行政和 财政政策直接跟代理院长谈三位杰出的自主神经科学家，艾伦·L。马克， William柴郡和欧文J. Schatz被邀请担任这一职务，因为他们在临床方面的专业知识 自主研究四个主要自治支持团体的代表，Shy-Drager-MSA 支持小组（唐萨默斯），国家自主神经功能障碍研究基金会（琳达J.史密斯）， Dysautonomia基金会（大卫布伦纳）和Dysautonomia信息网络（米歇尔Sawicki）也将 在指导委员会任职。可在实际开始时任命其他成员 的计划。预计他们将轮调三年，并可能连任 指导委员会将在大约三个月后与联合体领导人举行电话会议， 第一年的间隔。此外，大多数支持团体的代表参加了美国的 自治学会每年召开一次会议，届时将与项目主任正式会面， 首席调查员在这些会议上，将审查该计划的成就， 将评估当前的目标，并在适当的时候，集中在该计划的领域可能是 建议获得较低或较高的优先级。在指导委员会每次会议上， 所有的研究策略和假设检验将进行。我们预计， 委员会将导致研究方向和方法的实质性变化。

Oversight Committee. The Director of the Autonomic Rare Diseases Clinical Research Consortium, David Robertson, MD, reports to the Acting Dean of Vanderbilt Medical School, Jeffrey R. Balser, M.D., Ph.D. Dr Robertson receives input from the Directors of the 4 consortium sites (see figure above). The scientific input of the Oversight Committee will be communicated in teleconference_meetings. During the preparation of this proposal we had weekly teleconferences, and plan to continue with monthly teleconferences if our RDCRC is funded. In addition the investigators in the Oversight Committee will have face-to-face meetings twice yearly during the American Academy of Neurology (Spring) and the American Autonomic Society (Fall) scientific sessions. The Oversight Committee will review scientific progress, recruitment, outcomes, new developments, pilot proposals, fellowship applicants, and all aspects of management of the Consortium. Some issues, such as choice of pilot projects for support and selection of fellowship applicants for funding, must be by consensus of the Consortium Oversight Committee, so that resources are deployed in a fair and transparent way. When appropriate, this Committee may suggest changes in research direction and allocation of resources. Steering (External Advisory) Committee. The Steering Committee will also communicate directly with the Program Director and the relevant investigators, and in the event that there are matters of administration and fiscal policy, directly with the Acting Dean. Three distinguished autonomic scientists, Drs. Allyn L. Mark, William Cheshire, and Irwin J. Schatz were invited to serve in this capacity because of their expertise in clinical autonomic research. Representatives of the four major autonomic support groups, the Shy-Drager-MSA Support Group (Don Summers), the National Dysautonomia Research Foundation (Linda J. Smith), the Dysautonomia Foundation (David Brenner) and Dysautonomia Information Network (Michelle Sawicki) will also serve on the Steering Committee. Additional members might be appointed at the time of the actual beginning of the program. It is anticipated that they will serve three year rotations, with possible reappointment The Steering Committee will teleconference with the Consortium leaders at approximately three-month intervals in the first year. In addition most of the representatives of the support groups attend the American Autonomic Society meeting each year and will meet formally at that time with the Program Director and principal investigators. At these meetings, accomplishments of the program will be reviewed, progress on current aims will be evaluated, and when appropriate, areas of concentration in the program may be recommended to receive lower or higher priority. On each meeting of the Steering Committee, reexamination of all research strategies and hypothesis testing will be carried out. We anticipate that the input of the Steering Committee will lead to substantive changes in research direction and methodology.