{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T05:39:04Z","timestamp":1778132344975,"version":"3.51.4"},"reference-count":8,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2012,12,17]],"date-time":"2012-12-17T00:00:00Z","timestamp":1355702400000},"content-version":"vor","delay-in-days":16,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Annals of the New York Academy of Sciences"],"published-print":{"date-parts":[[2012,12]]},"abstract":"<jats:p>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\u2010derived 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\u2010reported data. We report the demographic analysis of MG patients in two large physician\u2010derived 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\u2010specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project.<\/jats:p>","DOI":"10.1111\/j.1749-6632.2012.06771.x","type":"journal-article","created":{"date-parts":[[2012,12,18]],"date-time":"2012-12-18T19:02:49Z","timestamp":1355857369000},"page":"107-113","source":"Crossref","is-referenced-by-count":9,"title":["Patient registries: useful tools for clinical research in myasthenia gravis"],"prefix":"10.1111","volume":"1274","author":[{"given":"Fulvio","family":"Baggi","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Renato","family":"Mantegazza","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlo","family":"Antozzi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Donald","family":"Sanders","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2012,12,17]]},"reference":[{"key":"e_1_2_4_2_2","author":"Gliklich R.E.","year":"2010","journal-title":"Registries for Evaluating Patient Outcomes: A User's Guide"},{"key":"e_1_2_4_3_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.55.1.16"},{"key":"e_1_2_4_4_2","doi-asserted-by":"publisher","DOI":"10.1196\/annals.1254.057"},{"key":"e_1_2_4_5_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e3181dc1b1e"},{"key":"e_1_2_4_6_2","first-page":"497","article-title":"Studies in myasthenia gravis: review of a twenty\u2010year experience in over 1200 patients","volume":"38","author":"Osserman K.E.","year":"1971","journal-title":"Mt. Sinai J. Med."},{"key":"e_1_2_4_7_2","doi-asserted-by":"publisher","DOI":"10.1007\/BF00314245"},{"key":"e_1_2_4_8_2","doi-asserted-by":"publisher","DOI":"10.1002\/mus.21185"},{"key":"e_1_2_4_9_2","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23330"}],"container-title":["Annals of the New York Academy of Sciences"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1749-6632.2012.06771.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/nyaspubs.onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1749-6632.2012.06771.x","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,18]],"date-time":"2023-09-18T06:19:12Z","timestamp":1695017952000},"score":1,"resource":{"primary":{"URL":"https:\/\/nyaspubs.onlinelibrary.wiley.com\/doi\/10.1111\/j.1749-6632.2012.06771.x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,12]]},"references-count":8,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2012,12]]}},"alternative-id":["10.1111\/j.1749-6632.2012.06771.x"],"URL":"https:\/\/doi.org\/10.1111\/j.1749-6632.2012.06771.x","archive":["Portico"],"relation":{},"ISSN":["0077-8923","1749-6632"],"issn-type":[{"value":"0077-8923","type":"print"},{"value":"1749-6632","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,12]]}}}