Administrative unit - Autonomic Rare Diseases Clinical Research Consortium

监督委员会。自主罕见疾病临床研究联盟主任David Robertson医学博士向Vanderbilt医学院代理院长Jeffrey R.Balser医学博士汇报工作。Robertson博士从4个联盟站点的主任那里获得意见(见上图)。监督委员会的科学投入将在电话会议上传达。在准备这项提案期间，我们每周举行一次电话会议，如果我们的RDCRC获得资金，我们计划继续每月举行一次电话会议。此外，监督委员会的调查员每年将举行两次面对面的会议。 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、奖学金申请者以及财团管理的方方面面。一些问题，例如 选择用于支持的试点项目和选择申请资助的研究金申请者，必须以协商一致的方式 财团监督委员会，以便以公平和透明的方式分配资源。什么时候 在适当的情况下，该委员会可建议改变研究方向和资源分配。 指导(外部咨询)委员会。督导委员会亦会直接与 项目总监和相关调查人员，以及在发生行政和 财政政策，直接与代理院长联系。三位杰出的自主科学家艾琳·L·马克博士， 威廉·切希尔和欧文·J·沙茨被邀请担任这一职务是因为他们在临床方面的专业知识。 自主研究。四大自主支持团体Shy-Drager-MSA的代表 支持小组(唐·萨默斯)、国家自主障碍研究基金会(琳达·J·史密斯)、 自主障碍基金会(David Brenner)和自主障碍信息网(Michelle Sawicki)也将 在指导委员会任职。可在实际开始时指定其他成员 计划的一部分。预计他们将轮换三年，并可能连任。 指导委员会将与财团领导人举行电话会议，为期约三个月 第一年的间隔时间。此外，大多数支持团体的代表都参加了美国 每年举行自主学会会议，届时将与计划主任和 首席调查员。在这些会议上，将审查该方案的成就、进展情况 将评估当前的目标，并在适当的情况下，该计划的重点领域可能是 建议接收更低或更高的优先级。在指导委员会的每次会议上，重新审查 在所有研究中，将进行策略和假设检验。我们预计方向盘的输入 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.