{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,24]],"date-time":"2026-09-24T04:24:06Z","timestamp":1790223846745,"version":"4.1.0"},"reference-count":27,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2017,4,4]],"date-time":"2017-04-04T00:00:00Z","timestamp":1491264000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100000187","name":"Faculty of Graduate Studies, University of British Columbia","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000187","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2017,5]]},"abstract":"<jats:sec>\n                    <jats:label\/>\n                    <jats:p>Arthrogryposis multiplex congenita (AMC) is a birth defect that involves congenital joint contractures in two or more joints including the limbs, spine, and jaw. The purpose of our study was to identify long\u2010term outcomes of adults with AMC. We recruited 177 participants from over 15 countries, making this the largest international study of adults with AMC. Participants provided demographic information including living situation and mobility and completed two standardized outcome measures, of quality of life and physical activity, using an online survey format. The data were compiled and descriptive analyses were performed. The study group consisted of 72% females and a mean age of 39 years. Over 90% of participants had upper and lower limb involvement, 35% had scoliosis or lordosis while 16% had jaw problems. Participants had an average of nine (0\u201370) surgeries at the time of the study. The majority (75%) of respondents lived independently of family members (on their own or with a partner). Participants were nearly three times more likely to have a graduate degree than the general US population. Participants reported lower physical function scores than the general US population; however, they reported similar or higher scores for the other quality of life domains of the SF\u201036. They were considerably less physically active than able\u2010bodied individuals. Half of participants experienced chronic back pain and 60% reported joint pain. Additionally, almost half of the participants took regular pain medications.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ajmg.a.38169","type":"journal-article","created":{"date-parts":[[2017,4,5]],"date-time":"2017-04-05T12:42:23Z","timestamp":1491396143000},"page":"1270-1278","source":"Crossref","is-referenced-by-count":55,"title":["Long\u2010term functional and mobility outcomes for individuals with arthrogryposis multiplex congenita"],"prefix":"10.1002","volume":"173","author":[{"given":"Hirmand","family":"Nouraei","sequence":"first","affiliation":[{"name":"Department of Orthopaedics University of British Columbia Vancouver British Columbia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bonita","family":"Sawatzky","sequence":"additional","affiliation":[{"name":"Department of Orthopaedics University of British Columbia Vancouver British Columbia Canada"},{"name":"International Collaboration on Repair Discoveries Vancouver British Columbia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Megan","family":"MacGillivray","sequence":"additional","affiliation":[{"name":"International Collaboration on Repair Discoveries Vancouver British Columbia Canada"},{"name":"Rehabilitation Sciences University of British Columbia Vancouver British Columbia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith","family":"Hall","sequence":"additional","affiliation":[{"name":"Departments of Medical Genetics and Pediatrics University of British Columbia and BC Children's Hospital Child and Family Research Institute Vancouver British Columbia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,4,4]]},"reference":[{"key":"e_1_2_6_2_1","unstructured":"Erickson W. von Schrader S. &Lee C.(2012). 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