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