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The NIH Office of Rare Diseases Research patient registry Standard: a report from the University of New Mexico's Oculopharyngeal Muscular Dystrophy Patient Registry.
Daneshvari, Shamsi; Youssof, Sarah; Kroth, Philip J.
Afiliação
  • Daneshvari S; The University of New Mexico School of Medicine, Albuquerque, NM.
  • Youssof S; The University of New Mexico School of Medicine, Albuquerque, NM.
  • Kroth PJ; The University of New Mexico School of Medicine, Albuquerque, NM.
AMIA Annu Symp Proc ; 2013: 269-77, 2013.
Article em En | MEDLINE | ID: mdl-24551336
Patient registries remove barriers to performing research by assembling patient cohorts and data in a systematic, efficient, and proactive manner. Consequently, registries are a valuable strategy for facilitating research and scientific discovery. Registries for rare diseases are arguably even more valuable since there is difficulty in assembling cohorts of adequate size for study. Recently, the NIH Office of Rare Diseases Research created a rare disease registry Standard to facilitate research across multiple registries. We implemented the Standard for the Oculopharyngeal Muscular Dystrophy patient registry created at the University of New Mexico Health Sciences Center. We performed a data element analysis for each Common Data Element defined in the Standard. Problems included the use of previous HL7 versions, non-structured data types, and a recent update to the Standard. Overall, the Standard is an excellent first step toward standardizing patient registries to facilitate work on broader questions and promote novel interdisciplinary collaborations.
Assuntos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Sistema de Registros / Distrofia Muscular Oculofaríngea / Doenças Raras Limite: Humans País/Região como assunto: America do norte / Mexico Idioma: En Revista: AMIA Annu Symp Proc Assunto da revista: INFORMATICA MEDICA Ano de publicação: 2013 Tipo de documento: Article País de publicação: Estados Unidos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Sistema de Registros / Distrofia Muscular Oculofaríngea / Doenças Raras Limite: Humans País/Região como assunto: America do norte / Mexico Idioma: En Revista: AMIA Annu Symp Proc Assunto da revista: INFORMATICA MEDICA Ano de publicação: 2013 Tipo de documento: Article País de publicação: Estados Unidos