{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,17]],"date-time":"2026-09-17T22:35:35Z","timestamp":1789684535988,"version":"4.0.1"},"reference-count":24,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2021,8,3]],"date-time":"2021-08-03T00:00:00Z","timestamp":1627948800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100011909","name":"Australasian Foundation for Plastic Surgery","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011909","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Paediatrics Child Health"],"published-print":{"date-parts":[[2022,1]]},"abstract":"<jats:sec><jats:title>Aims<\/jats:title><jats:p>Children with a congenital upper limb difference (CoULD) are a diverse group who often require multidisciplinary care and long\u2010term support for functional and social impacts. The Australian Hand Difference Register (AHDR) provides a national database of children born with a CoULD and aims to facilitate research and improve health care for affected children. Using data from the first 3\u2009years of its operation, we analysed the demographic and clinical features of participating families, including type of CoULDs and the frequency of pre\u2010natal and syndromic diagnoses.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Families were recruited from tertiary plastic surgery, orthopaedic and genetics clinics, as well as by self\u2010referral. Hand differences were classified by the consulting physician according to the Oberg\u2013Manske\u2013Tonkin classification system. Primary carers were invited to complete an online questionnaire covering demographic information, pregnancy and newborn outcomes and diagnostic details.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Between August 2017 and September 2020, 822 families consented and 320 questionnaires were reviewed. CoULDs were detected pre\u2010natally in 66 (20.6%) and post\u2010natally in 248 children (77.5%); data for 6 (1.9%) children were missing. The most common CoULDs were radial polydactyly, symbrachydactyly with ectodermal elements and radial longitudinal deficiency, hypoplastic thumb. Twenty\u2010seven children (8.4%) had an associated syndrome, 7 diagnosed pre\u2010natally and 19 post\u2010natally; the most common were VACTERL association, Poland anomaly, Holt\u2013Oram and ectrodactyly\u2013ectodermal dysplasia\u2013clefting syndromes.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The AHDR is a valuable resource for understanding the relative frequencies of CoULDs. Participation will assist future research into the diagnostic journeys of children with CoULDs, including risk factors, diagnosis and psychosocial impacts.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jpc.15673","type":"journal-article","created":{"date-parts":[[2021,8,3]],"date-time":"2021-08-03T17:33:53Z","timestamp":1628012033000},"page":"122-128","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Pre\u2010natal and post\u2010natal diagnosis of congenital upper limb differences: The first 3\u2009years of the Australian Hand Difference Register"],"prefix":"10.1111","volume":"58","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1666-3445","authenticated-orcid":false,"given":"David","family":"O'Keefe","sequence":"first","affiliation":[{"name":"Mercy Hospital for Women  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9109-6623","authenticated-orcid":false,"given":"Joanne","family":"Kennedy","sequence":"additional","affiliation":[{"name":"Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4458-3925","authenticated-orcid":false,"given":"David","family":"McCombe","sequence":"additional","affiliation":[{"name":"Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Plastic &amp; Maxillofacial Surgery The Royal Children's Hospital  Melbourne Victoria Australia"},{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0367-8234","authenticated-orcid":false,"given":"Chris","family":"Coombs","sequence":"additional","affiliation":[{"name":"Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Plastic &amp; Maxillofacial Surgery The Royal Children's Hospital  Melbourne Victoria Australia"},{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9720-3562","authenticated-orcid":false,"given":"Lisa","family":"Hui","sequence":"additional","affiliation":[{"name":"Mercy Hospital for Women  Melbourne Victoria Australia"},{"name":"Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Obstetrics &amp; Gynaecology The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0617-6712","authenticated-orcid":false,"given":"Daniel","family":"Wilks","sequence":"additional","affiliation":[{"name":"Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Plastic &amp; Maxillofacial Surgery The Royal Children's Hospital  Melbourne Victoria Australia"},{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6206-3857","authenticated-orcid":false,"given":"Jane","family":"Halliday","sequence":"additional","affiliation":[{"name":"Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,8,3]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-2004-817884"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1053\/jhsu.2001.26121"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2011.03.015"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2013.11.014"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/BPO.0000000000000748"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0015651"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2015.04.013"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.34239\/ajops.v1i2.115"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2020.01.002"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1142\/S0218810415400055"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0363-5023(76)80021-4"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejmg.2015.11.003"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejmg.2018.07.015"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jhsa.2014.10.038"},{"key":"e_1_2_7_18_1","unstructured":"The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.Prenatal Assessment of Fetal Structural Conditions (C\u2010Obs\u201060). 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