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- W1895952714 abstract "Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician‐derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self‐reported data. We report the demographic analysis of MG patients in two large physician‐derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG‐specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project." @default.
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- W1895952714 date "2012-12-01" @default.
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- W1895952714 title "Patient registries: useful tools for clinical research in myasthenia gravis" @default.
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- W1895952714 doi "https://doi.org/10.1111/j.1749-6632.2012.06771.x" @default.
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