{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T08:20:10Z","timestamp":1787905210720,"version":"build-2784847793"},"reference-count":20,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T00:00:00Z","timestamp":1787875200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T00:00:00Z","timestamp":1787875200000},"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>This reflective essay explores how collaborative work between researchers and adults living with Arthrogryposis Multiplex Congenita (AMC) has deepened and broadened our understanding of what it means to live with this rare condition. By intentionally integrating the lived experiences of individuals with AMC into research processes, the resulting registry becomes far richer, more representative, and more meaningful. Including people with AMC as co\u2010investigators not only strengthens the quality and relevance of the data collected but also offers participants a sense of agency, ownership, and empowerment within the research journey. This essay highlights a growing shift in rare\u2010disease research toward approaches that prioritize patient\u2010centered knowledge and long\u2010term data collection. As registries become essential tools for understanding rare conditions, the inclusion of lived experience is increasingly recognized as a critical component in shaping their design, development, and ongoing evolution. However, building and sustaining a registry that may span an entire lifetime is not without its challenges. Issues such as maintaining engagement, ensuring accessibility, and navigating the emotional and logistical complexities of long\u2010term participation all require thoughtful consideration. This paper reflects on these complexities while emphasizing the value of collaborative, experience\u2010driven research in advancing understanding of AMC.<\/jats:p>","DOI":"10.1002\/ajmg.c.70020","type":"journal-article","created":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T08:15:39Z","timestamp":1787904939000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Understanding Arthrogryposis Multiplex Congenita (\n                    <scp>AMC<\/scp>\n                    ) Across the Lifespan: An Integrative Review of the Adult\n                    <scp>AMC<\/scp>\n                    Registry's Contributions With Lived Experience Partnerships"],"prefix":"10.1002","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8901-2301","authenticated-orcid":false,"given":"Bonita J.","family":"Sawatzky","sequence":"first","affiliation":[{"name":"Department of Orthopaedics University of British Columbia  Vancouver Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Megan K.","family":"MacGillivray","sequence":"additional","affiliation":[{"name":"Interdisciplinary Health Program, St Francis Xavier University  Antigonish Nova Scotia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tracey","family":"Schalk","sequence":"additional","affiliation":[{"name":"Person With Lived Experience  Findlay Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William Bennett","family":"Mortenson","sequence":"additional","affiliation":[{"name":"Department of Occupational Science and Occupational Therapy University of British Columbia  Vancouver Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,8,28]]},"reference":[{"key":"e_1_2_14_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13040"},{"key":"e_1_2_14_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40290\u2010020\u201000332\u20101"},{"key":"e_1_2_14_4_1","unstructured":"Canadian Organization for Rare Disorders.2015.\u201cNow Is the Time: A Strategy for Rare Diseases is a Strategy for All Canadians.\u201dhttps:\/\/www.raredisorders.ca\/uploads\/Documents\/CORD_Canada_RD_Strategy_22May15.pdf."},{"key":"e_1_2_14_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31724"},{"key":"e_1_2_14_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13063\u2010022\u201006713\u2010y"},{"key":"e_1_2_14_7_1","doi-asserted-by":"crossref","DOI":"10.23970\/AHRQEPCREGISTRIES4","volume-title":"Registries for Evaluating Patient Outcomes: A User's Guide","author":"Gliklich R. 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