Patient registries: useful tools for clinical research in myasthenia gravis.

Published

Journal Article

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.

Full Text

Duke Authors

Cited Authors

  • Baggi, F; Mantegazza, R; Antozzi, C; Sanders, D

Published Date

  • December 2012

Published In

Volume / Issue

  • 1274 /

Start / End Page

  • 107 - 113

PubMed ID

  • 23252904

Pubmed Central ID

  • 23252904

Electronic International Standard Serial Number (EISSN)

  • 1749-6632

Digital Object Identifier (DOI)

  • 10.1111/j.1749-6632.2012.06771.x

Language

  • eng

Conference Location

  • United States