About congenital hand differences

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 uncommon and occur in up to 30 children in every 10,000 births, depending on the population studied.

What is the Australian Hand Difference Register? 

In Australia, limited data have been collected about hand differences. This has left many questions unanswered about how often these occur, their causes and how they impact on the child’s health and wellbeing.  

The Australian Hand Difference Register (AHDR) was established in 2017 to do research on these questions. The AHDR contains information about children living in Australia who were born with a hand or arm difference. 

The AHDR will help us to:

• find out how many children are born with various types of hand and or arm difference in Australia
• improve our understanding about causes and risk factors
• gain information to help in planning services
• identify possible participants for future research
• identify the effects of hand differences on children
• decide how to best manage hand differences.
  
  

Contact us

Australian Hand Difference Register
Murdoch Children's Research Institute
The Royal Children's Hospital
50 Flemington Road
Parkville VIC 3052
Australia

Jo Kennedy, Senior Project Coordinator
Email: show email address
Phone: show phone number

What being part of the register involves

To enable us to collect important information about the number of children born in Australia with various hand or arm differences, the AHDR will include a minimum data set of information about the hand / arm difference of all children notified to the AHDR; however, no information that could identify you / your child will be recorded unless you give your consent for you / your child to be part of the AHDR.

We would like to collect health and related information about you / your child from several sources. Each of these sources is explained below. We would like you to consider giving your permission for each of these, however it is your choice which you agree to. You may decide to agree to some or all of them. 

Optional enrolment questionnaire 

We would like you to fill in a one-off questionnaire. Ideally, this is filled in by the child’s mother as it includes questions about pregnancy and birth. It also includes questions about family background and child health. The questionnaire takes about 30 minutes to do and can be done online, on printed copy, or by phone interview, whichever you prefer.

Optional access to hospital medical records

We would like to collect and use information from your / your child’s hospital medical record. The information we would collect includes: diagnosis, functioning, treatment, and outcome of treatment. 

Optional future research

We would like you to consider letting us send you information about new research projects that may be suitable for you / your child. Any information we send will give you the full details about the project. It is your choice whether you agree to take part / let your child take part in any future project. You are not obliged to take part in any future research you are sent information about.

Optional outcome questionnaires

We would like to send you a series of short questionnaires for you or your child to complete when your child is age 5, 8, 11, 14 and 17 years. The questionnaires will allow us to assess how your child views their hand difference and how it affects their function and behaviour, if at all. This information may help us determine how to best manage hand differences like that of your child’s. It is your choice whether your child completes some, all, or none of the questionnaires.

Understanding Patient Reported Outcomes Measurement Information System (PROMIS)

Frequently asked questions

Research team

Associate Professor David McCombe
Clinical Lead, Hand and Microvascular Surgery, Department of Plastic and Maxillofacial Surgery, The Royal Children’s Hospital (RCH) & Murdoch Children’s Research Institute

Professor Tony Penington
Jigsaw Professor, Department of Plastic and Maxillofacial Surgery, The Royal Children’s Hospital & Research Group Leader, Plastic Surgery Research, Murdoch Children’s Research Institute

Mr Daniel Wilks 
Surgeon, Department of Plastic and Maxillofacial Surgery, The Royal Children’s Hospital

Dr Richard Lawson
Unit Director, Hand Surgery, The Children’s Hospital at Westmead, Sydney 

Ms Rose Biggins
Musculoskeletal Stream Leader, Occupational Therapy, The Royal Children’s Hospital

Ms Joanne Kennedy
AHDR Coordinator, Reproductive Epidemiology, Murdoch Children’s Research Institute

Site Principal Investigators

Associate Professor Stuart Bade
Director of Plastic and Reconstructive Surgery and Oral and Maxillofacial Surgery, Queensland Children's Hospital 

Associate Professor David Graham
Hand Surgeon / Orthopaedic Surgeon, Gold Coast University Hospital

Dr Isaac Harvey
Consultant Plastic and Reconstructive Surgeon, Women’s and Children’s Hospital, Adelaide

Dr Sid Karanth
Plastic and Reconstructive Surgeon, Royal Hobart Hospital

Dr Richard Lawson
Unit Director–Hand Surgery, The Children’s Hospital at Westmead, Sydney

Dr Nelson Low
Head, Plastic Surgery Unit, Monash Children’s Hospital, Melbourne

Dr Sean Nicklin
Consultant Hand Surgeon, Sydney Children’s Hospital Randwick

Dr Rohan Page 
Plastic and Reconstructive Surgeon and Hand Surgeon, Perth Children’s Hospital 

Ms Leslie Wollin 
Occupational Therapist, HNEkidsRehab, Hunter New England Local Health District 

Collaborators

The AHDR has been supported by the:

• McNally Family Foundation
• Australasian Foundation for Plastic Surgery
• Australian Society of Plastic Surgeons

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:

• The Royal Children's Hospital (RCH), Parkville, Victoria
• Monash Children's Hospital, Clayton, Victoria
• Sydney Children's Hospital, Randwick, New South Wales
• The Children's Hospital at Westmead, New South Wales
• Gold Coast University Hospital, Queensland
• Queensland Children's Hospital, Brisbane, Queensland
• Women's and Children's Hospital, Adelaide, South Australia
• Perth Children's Hospital, Western Australia
• Royal Hobart Hospital, Tasmania

AHDR newsletters

Download our latest particiipant newsletters. You will find out more about AHDR and read some of our patient stories.

• AHDR Newsletter June 20251.12 MB
• AHDR Newsletter December 20241.07 MB
  
  

AHDR annual reports

Download our most recent annual reports.

• AHDR Annual Report 20241.05 MB
• AHDR Annual Report 2023825.81 KB
• AHDR Annual Report 2022258.85 KB
• AHDR Annual Report 2021240.57 KB
  

Publications

Wilks, D., Cevik, J., Kennedy, J., Coombs, C., Penington, A., McCombe, D. An analysis of the functional and psychosocial impact of congenital upper limb differences using PROMIS®: data from the Australian Hand Difference Register. J Hand Surg Eur Vol. 2025 Jul 8:17531934251355084.  doi: 10.1177/17531934251355084. 

McCombe, D., Wall, L., Goldfarb, C., Hulsemann, W., Sletter, I., Wilks, D., Horwitz, M., Lan, W. Congenital upper limb difference patient registries: characteristics, comparisons and recommendations. J Hand Surg Eur Vol. 2025 Jun 12:17531934251348360. doi: 10.1177/17531934251348360. 

Huang AH, Evans J, Coombs CJ, McCombe DB, Wilks DJ. Existing tools to assess hand appearance in children with congenital hand differences: a scoping systematic review. European Journal of Plastic Surgery [Internet]. 2025 Mar 24 [cited 2025 Jun 16];48(1):36. 

Wilks, D., McCombe, D. Developing a Congenital Upper Limb Difference Registry in Australia J Hand Surg Asian Pac Vol. 2024 Dec;29(6):486-491. doi: 10.1142/S2424835524300068. Epub 2024 Nov 22. 

Fernando A, Wilks DJ. Bilateral Dorsal Nail Curvature of the Thumb Distal Phalanx – A Case Report. J Hand Surg (Asia Pacific). 2024. 29(2)156-159 

O'Keefe D, Kennedy J, McCombe D, Coombs C, Hui L, Wilks D, Halliday J. Pre-natal and post-natal diagnosis of congenital upper limb differences: The first 3 years of the Australian Hand Difference Register. J Paediatr Child Health. 2022 Jan;58(1):122-128. doi: 10.1111/jpc.15673. Epub 2021 Aug 3. PMID: 34343375.

McDougall L, Kennedy J, Coombs C, Penington A. The psychosocial impact of congenital hand and upper limb differences on children: a qualitative study. J Hand Surg Eur Vol. 2021 May;46(4):391-397. doi: 10.1177/1753193420967527. Epub 2020 Oct 29. PMID: 33121298.

McCombe D, Coombs C, Tolerton S. Keeping up to date with classification of congenital upper limb differences: the Australian perspective. J Hand Surg Eur Vol. 2020 Dec;45(10):1111-1112. doi: 10.1177/1753193420964398. Epub 2020 Oct 22. PMID: 33092453.