CORE--PATIENT ACCESS AND DATA MANAGEMENT

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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.