{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T03:46:16Z","timestamp":1782531976647,"version":"3.54.5"},"reference-count":42,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T00:00:00Z","timestamp":1782432000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T00:00:00Z","timestamp":1782432000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt C"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>Arthrogryposis multiplex congenita (AMC) is a group of rare congenital conditions, characterized by multiple joint contractures but may involve any body system including central nervous system. AMC is etiologically heterogeneous, with over 400 genetic and many non\u2010genetic causes implicated in its prenatal development. AMC requires lifelong, multidisciplinary management, a challenge compounded by their rarity and phenotypic heterogeneity. Our understanding of AMC is hampered by diagnostic delays, scarce trained specialists, and variable clinician expertise. Research networks are paramount to harmonize efforts, increase awareness, and accelerate progress toward understanding of rare conditions. Therefore, we established a consortium for AMC (IC4AMC) in 2020, a multi\u2010national network dedicated to improving AMC care, research, and knowledge across North America, Europe, and West Asia. IC4AMC engages a diverse group of stakeholders including clinicians, researchers, individuals with AMC, families, and support groups to better understand and address the most pressing needs in AMC care and research. In this paper, we introduced the missions and aims of the IC4AMC around four pillars of early detection, clinical care, research, and education, all embedded in two cross\u2010cutting principles of knowledge mobilization and community engagement. This effort will inform the development of targeted initiatives aimed at improving outcomes for rare diseases.<\/jats:p>","DOI":"10.1002\/ajmg.c.70013","type":"journal-article","created":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T03:03:37Z","timestamp":1782529417000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The International Consortium for Arthrogryposis: A Collaborative Framework for Early Detection, Care, Research, and Education"],"prefix":"10.1002","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1248-7306","authenticated-orcid":false,"given":"Shahrzad","family":"Nematollahi","sequence":"first","affiliation":[{"name":"Clinical Research Department Shriners Hospitals for Children\u2010Canada  Montreal Quebec Canada"},{"name":"Ottawa Methods Centre, Ottawa Hospital Research Institute  Ottawa Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noa","family":"Bouzaglo","sequence":"additional","affiliation":[{"name":"Faculty of Medicine and Health Sciences McGill University  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Victoria Castillo","family":"Sanchez","sequence":"additional","affiliation":[{"name":"Asociaci\u00f3n de Pacientes de Artrogriposis Multiple Cong\u00e9nita  Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1555-8045","authenticated-orcid":false,"given":"Johanna I. 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