CORE--PATIENT ACCESS AND DATA MANAGEMENT

患者访问和数据管理核心是一个新的 建立核心，旨在促进和促进患者- 以皮肤病为中心的相关研究。 在第一个目标下 （患者通道组件），提供 协调和具有成本效益的临床合作将 建立。 基础和临床科学家之间的联系将 优化，从不同的患者信息库 皮肤科诊所将组织，和病人访问 协调员将作为信息交换中心， 相关信息 该协调员还将协助 研究者安排患者访视以进行评估，收集 相关的标本，确保适当的处理和运输， 准备人类使用的协议，加快他们的进展， 监管机构，并保存人体实验的档案 记录 在第二个目标（数据管理部分）下， 皮肤病生物统计资源小组 研究将继续进行。 SDRC参与者可以利用 关于数据管理和统计分析的课程和研讨会 不花任何代价 咨询资源将用于协助 研究人员设计临床方案和分析数据。 最后，两项发展任务将由非SDRC提供资金 部门资金：将开发一个自动化数据库， 存储关于皮肤病患者的临床信息， 选定皮肤患者生活质量调查的有效性 疾病将得到检验。

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.