Help support the Australian Hand Difference Register

What are Congenital Upper Limb Differences (CULDs)?

Being born with a hand or arm that is different is common. It affects over 500 children born in Australia every year.

A congenital hand difference can be a lifetime challenge affecting the child’s function and appearance. While we group these conditions together and call them Congenital Upper Limb Differences (CULDs), they have different causes, and the impact they have upon the child and their families varies significantly. 

Congenital Upper Limb Differences (CULDs) are a broad range of conditions which occur when the formation of the hand and/or arm is disturbed during pregnancy. These differences can result in in the upper limb having missing or extra parts, or having too much, or too little growth of part or all of the hand and/or arm.

We are just beginning to understand how hand differences affect the development, function and experience of children and their families. We know that the hand and arm play an important role in healthy development. The hand is a key point of contact with the external world, for the child to explore and move objects. More than this though, the hand plays an important role in communication. Activities such as pointing, to more complex non-verbal communication, and even using technology that is becoming more common in our day-to-day life. Children with hand differences are known to adapt well, but challenges remain.

Our knowledge of how children adapt and whether there are gaps that could be helped by medical treatments or therapy is currently insufficient. We need to know more about not only the causes, but also the impact of hand differences, and which treatments are most effective in each case. 

Why is the AHDR vital to hand difference research?

In 2017, the Australian Hand Difference Register (AHDR) was established to facilitate research. It is housed and managed at Murdoch Children’s Research Institute and has been developed in collaboration with hand surgeons, researchers and health professionals across Australia, with input from the community group, Aussie Hands. This was made possible with the generous support of the McNally Family Foundation, The Australasian Plastic Surgery Foundation, Aussie Hands and other generous donors.

The AHDR provides data and generates momentum in research and education about children with this complex and varied group of conditions. It allows Australian clinicians to collaborate with their international colleagues to enhance knowledge and expertise. With this new knowledge, researchers and clinicians are well-placed to improve health service provision, treatment, and quality of life for patients with congenital hand differences. 

Why we need support

Research needs funding to keep the registry running and to undertake projects that will have a direct impact on the lives of children with hand differences. We have a dedicated team of doctors, therapists and researchers who, with your support, will have the time and resources to concentrate on the critical research giving families more informed choices, improve outcomes of treatments, and help to relieve the anxiety of parents and their children about what their hand difference will mean for them and their future.

Help support the AHDR and give children with a hand difference the best possible outcome by donating today. 

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