Premium
Patient registries: useful tools for clinical research in myasthenia gravis
Author(s) -
Baggi Fulvio,
Mantegazza Renato,
Antozzi Carlo,
Sanders Donald
Publication year - 2012
Publication title -
annals of the new york academy of sciences
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.712
H-Index - 248
eISSN - 1749-6632
pISSN - 0077-8923
DOI - 10.1111/j.1749-6632.2012.06771.x
Subject(s) - myasthenia gravis , medicine , clinical trial , patient registry , disease registry , disease , pediatrics , patient data , intensive care medicine , database , computer science
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.