August 1987

Announcement of the National Epidermolysis Bullosa Registry

Author Affiliations

Epidermolysis Bullosa Registry The Rockefeller University 1230 York Ave New York, NY 10021-6399

Am J Dis Child. 1987;141(8):833. doi:10.1001/archpedi.1987.04460080019015

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Sir.—The Laboratory for Investigative Dermatology at The Rockefeller University, New York, was recently awarded a five-year contract by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, Bethesda, Md, to establish a National Epidermolysis Bullosa (EB) Registry. The Registry, which is headed by D. Martin Carter, MD, comprises a Data Coordinating Center (DCC), Which is based at The Rockefeller University Hospital; four geographically dispersed clinical centers; and a steering committee. The DCC is responsible for the overall operations of the Registry. The clinical centers are headed by A. E. Baue, MD, at the Washington University School of Medicine, St Louis; J. D. Fine, MD, at the University of Alabama, Birmingham; V. P. Sybert, MD, at the University of Washington School of Medicine, Seattle; and Dr Carter. These clinical centers are responsible for patient enrollment in their cachement areas, patient examinations, and transmitting information to the DCC. The steering

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