CORE--PATIENT ACCESS AND DATA MANAGEMENT

患者访问和数据管理核心是一种新的 建立核心，旨在促进和促进患者- 以皮肤病相关研究为中心。在第一个目标下 (患者通道组件)，中央设施提供 协调、经济高效地访问临床协作将 被建立起来。基础和临床科学家之间的联系将 被优化，一个来自不同国家的患者信息储存库 皮肤科诊所将被组织起来，并为患者提供 协调人将作为~交换所~交换~ 相关信息。该协调员还将协助 调查人员安排患者探视进行评估，收集 相关标本，确保适当的处理和运输， 准备人类使用方案，通过以下方式加快进展 管理机构，并保存人体实验的文件 唱片。在第二个目标(数据管理部分)下，一个 皮肤病专属时间生物统计资源群 研究将保持不变。国家发改委参与者可利用 关于数据管理和统计分析的课程和研讨会 免费的。将分配咨询资源以协助 研究人员在设计临床方案和分析数据方面的作用。 最后，两项发展任务将由非发改委提供资金 部门资金：将开发一个自动化数据库，以 存储有关皮肤病患者的临床信息，以及 精选皮肤患者生活质量调查的效度 将对疾病进行测试。

The Patient Access and Data Management Core is a newly established core designed to promote and facilitate patient- centered, skin disease-related research. Under the first aim (Patient Access Component), a central facility providing coordinate and cost-effective access to clinical collaboration will be established. Linkage between basic and clinical scientists will be optimized, a repository of patient information from different dermatology clinics will be organized, and a Patient Access Coordinator will serve as a ~clearing house~ for exchange of relevant information. This Coordinator will also assist investigators in scheduling patient visits for evaluation, collecting pertinent specimens, insuring proper handling and transport, preparing human use protocols, expediting their progress through regulatory bodies, and keeping files of human experimentation records. Under the second aim (Data Management Component), a biostatistical resource group with dedicated time for skin disease research will be maintained. SDRC participants may avail of courses and seminars on data management and statistical analysis at no cost. Consultative resources will be allocated to assist investigators in designing clinical protocols and in analyzing data. Finally, two developmental tasks will be financed by non-SDRC departmental funds: an automated database will be developed to store clinical information concerning skin disease patients, and the validity of quality-of-life surveys for patients with selected skin diseases will be tested.