{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,17]],"date-time":"2026-09-17T22:36:28Z","timestamp":1789684588286,"version":"4.0.1"},"reference-count":17,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2025,6,12]],"date-time":"2025-06-12T00:00:00Z","timestamp":1749686400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,6,12]],"date-time":"2025-06-12T00:00:00Z","timestamp":1749686400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Hand Surg Eur Vol"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:p>Clinical registries that allow longitudinal patient follow-up with standardized outcome measures are useful tools for collecting data that can be used to inform patients and clinicians about the aetiology, natural history and response of various conditions to treatment. Registries are being employed across the world for children with congenital upper limb differences where the benefits of accumulated data for this heterogenous group of significant conditions are proving invaluable including the Congenital Upper Limb Difference registry in the United States, the Congenital Upper Limb Anomaly North registry in northern Europe, the Australian Hand Difference Register in Australia and the British Society for Surgery of the Hand Registry in the UK. These registries collect similar data allowing effective interoperability while retaining individual features unique to each registry. Recommendations for further development are made based on analysis of the development and methodology of these existing registries.<\/jats:p>","DOI":"10.1177\/17531934251348360","type":"journal-article","created":{"date-parts":[[2025,6,12]],"date-time":"2025-06-12T08:00:38Z","timestamp":1749715238000},"page":"111-118","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["Congenital upper limb difference patient registries: characteristics, comparisons and recommendations"],"prefix":"10.1177","volume":"51","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4458-3925","authenticated-orcid":false,"given":"David","family":"McCombe","sequence":"first","affiliation":[{"name":"Australian Hand Difference Register, Murdoch Children\u2019s Research Institute, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lindley","family":"Wall","sequence":"additional","affiliation":[{"name":"Department of Orthopaedic Surgery at Washington University School of Medicine, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charles","family":"Goldfarb","sequence":"additional","affiliation":[{"name":"Department of Orthopaedic Surgery at Washington University School of Medicine, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wiebke","family":"H\u00fclsemann","sequence":"additional","affiliation":[{"name":"Hand Surgery Department, Children\u2019s Hospital Wilhelmstift, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ida Neerg\u00e5rd","family":"Sletten","sequence":"additional","affiliation":[{"name":"Division of Orthopaedic Surgery, Oslo University Hospital, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Wilks","sequence":"additional","affiliation":[{"name":"Australian Hand Difference Register, Murdoch Children\u2019s Research Institute, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maxim D","family":"Horwitz","sequence":"additional","affiliation":[{"name":"United Kingdom Hand Registry, Chelsea and Westminster Hospital, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wee Leon","family":"Lam","sequence":"additional","affiliation":[{"name":"Department of Plastic and Reconstructive Surgery, Royal Hospital for Children and Young People, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,6,12]]},"reference":[{"key":"e_1_3_6_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/BPO.0000000000000732"},{"key":"e_1_3_6_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2010.04.011"},{"key":"e_1_3_6_4_1","doi-asserted-by":"publisher","DOI":"10.1097\/00004694-199809000-00001"},{"key":"e_1_3_6_5_1","volume-title":"Registries for evaluating patient outcomes: a user\u2019s guide","author":"Gilklich RE","year":"2014","unstructured":"Gilklich RE, Dreyer NA, Leavy MB, editors. 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