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Los CDEs incluyen 321 elementos de datos y 19 medidas estandarizadas en varios dominios desde el desarrollo fetal hasta la edad adulta. Los elementos de datos relativos a los rasgos fenot\u00edpicos del CDEs se mapearon de acuerdo con la Ontolog\u00eda de Fenotipos Humanos. Se identificaron como principales facilitadores la estructura de gobernanza universal, protocolos operados de forma local y los planes de sostenibilidad, mientras que los principales obst\u00e1culos observados son la capacidad limitada para compartir datos y la necesidad de una infraestructura inform\u00e1tica federada.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretaci\u00f3n<\/jats:title><jats:p>La recopilaci\u00f3n de datos sistem\u00e1ticos sobre la AMC mediante CDEs permitir\u00e1 investigar las v\u00edas etiol\u00f3gicas, describir el perfil epidemiol\u00f3gico y establecer correlaciones genotipo\u2010fenotipo de forma estandarizada. Los CDEs propuestos facilitar\u00e1n las colaboraciones multidisciplinares internacionales mejorando los estudios a gran escala y las oportunidades para compartir datos, translaci\u00f3n de conocimiento y difusi\u00f3n.<\/jats:p><\/jats:sec>","DOI":"10.1111\/dmcn.15914","type":"journal-article","created":{"date-parts":[[2024,4,6]],"date-time":"2024-04-06T09:03:25Z","timestamp":1712394205000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Elementos de datos comunes para la artrogriposis m\u00faltiple cong\u00e9nita: Un marco internacional"],"prefix":"10.1111","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1248-7306","authenticated-orcid":false,"given":"Shahrzad","family":"Nematollahi","sequence":"first","affiliation":[{"name":"Escuela de Fisioterapia y Terapia Ocupacional Universidad McGill  Montreal Canad\u00e1"},{"name":"Departamento de Investigaci\u00f3n Cl\u00ednica Hospitales Shriners para Ni\u00f1os  Montreal Canad\u00e1"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4362-4062","authenticated-orcid":false,"given":"Klaus","family":"Dieterich","sequence":"additional","affiliation":[{"name":"Universit\u00e9 Grenoble Alpes, Inserm U1209, Instituto de Biociencias Avanzadas, CHU Grenoble Alpes, Centro de Referencia de Artrogriposis y Neuromuscular  Grenoble Francia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Isabel","family":"Filges","sequence":"additional","affiliation":[{"name":"Gen\u00e9tica M\u00e9dica, Instituto de Gen\u00e9tica M\u00e9dica y Patolog\u00eda y Departamento de Investigaci\u00f3n Cl\u00ednica Hospital Universitario de Basilea y Universidad de Basilea  Basilea Suiza"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johanna I. 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