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Australian Hand Difference Register

Research project

A congenital hand difference is a hand or arm difference that is present at birth. Some of the more common differences include:

  • having more or fewer than five fingers
  • fingers that will not bend or will not straighten
  • fingers that are joined together
  • bones in the hand or arm that are too short or missing

Congenital hand differences are not that common and occur in up to 30 children in every 10,000 births, depending on the population studied [1,2,3].

The Australian Hand Difference Register (AHDR) is a database of children born with a hand difference and/or arm difference. The AHDR is managed by researchers at the Murdoch Children’s Research Institute, which is located at The Royal Children’s Hospital in Melbourne. 

The AHDR aims to:

  • find out how many children are born with a hand/arm difference in Australia
  • learn more about possible causes and risk factors
  • gain information to help plan services
  • identify possible participants for future research
  • identify the effects of hand differences on children
  • decide how to best manage hand differences
Funding

The AHDR has been supported by the McNally Family Foundation, Aussie Hands (a support group for people who have a hand difference and their families), and the Australasian Foundation for Plastic Surgery. Funding organisations do not have access to any individual or confidential information contained on the AHDR. 

We are currently recruiting children and their families from:

                                                                                   

 

References

1. Giele et al. (2001) J Hand Surg Am 26:628. 

2. Goldfarb et al. (2017) J Paediatr Orthop 37:144.

3. Ekblom (2013) J Hand Surg 39:237.