title: Patient registries: useful tools for clinical research in myasthenia gravis.
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.
authors.affiliation: Istituto Neurologico Carlo Besta, Milan, Italy. baggi@istituto-besta.it
authors.forename: Fulvio
authors.initials: F
authors.lastname: Baggi
authors.forename: Renato
authors.initials: R
authors.lastname: Mantegazza
authors.forename: Carlo
authors.initials: C
authors.lastname: Antozzi
authors.forename: Donald
authors.initials: D
authors.lastname: Sanders
mesh_terms: D000328:Adult; D000368:Aged; D035843:Biomedical Research; D015331:Cohort Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009157:Myasthenia Gravis / Q000175:diagnosis / Q000503:physiopathology / Q000628:therapy; D012042:Registries