Journal article

Pre-natal and post-natal diagnosis of congenital upper limb differences: The first 3 years of the Australian Hand Difference Register

David O'Keefe, Joanne Kennedy, David McCombe, Chris Coombs, Lisa Hui, Daniel Wilks, Jane Halliday

JOURNAL OF PAEDIATRICS AND CHILD HEALTH | WILEY | Published : 2021

Abstract

AIMS: Children with a congenital upper limb difference (CoULD) are a diverse group who often require multidisciplinary care and long-term 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 years of its operation, we analysed the demographic and clinical features of participating families, including type of CoULDs and the frequency of pre-natal and syndromic diagnoses. METHODS: Families were recruited from tertiary plastic surgery, orthopaedic and genetics clinics, as well as by self-referra..

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Grants

Funding Acknowledgements

Thank you to Aussie Hands for engaging families and supporting the development of the register. We acknowledge our funders, The Aussie Hands Foundation Incorporated, McNally Family Foundation and Australasian Foundation for Plastic Surgery. LH was funded by a University of Melbourne Faculty of Medicine, Dentistry and Health Sciences Research Fellowship (2020), and a Medical Research Future Fund Emerging Leader fellowship (2021-2025).