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Using web-based data on disability to make a difference

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Monday, 17 November 2008

In the 19th century, doctors had little more than stethoscopes and microscopes to help them understand disease.  More than 100 years later, for doctors like The University of Western Australia's Clinical Associate Professor Helen Leonard, computers are proving an invaluable tool. 

Dr Leonard, who was recently awarded a national research fellowship, aims to develop new paradigms to study diseases that may be individually rare but that make a substantial contribution to the burden of disability in childhood in Australia and elsewhere.  A big part of her work involves making use of the World Wide Web.

Based at the Telethon Institute for Child Health Research, Dr Leonard's National Health and Medical Research Council fellowship will help her build on her 15 years' research on a range of issues relating to childhood disability and the translation of research findings into practice.

Dr Leonard said over the next five years she would examine Australian and world-wide data on disabilities such as Down and Rett syndrome and autism to try to understand their causes and to measure the impact of these conditions on the affected child, the family, including the siblings, and the community.

"As part of my work, I manage the Western Australian Intellectual Disability Database - a population-based research resource unique in Australia that offers a major contribution to the health and well-being of an often neglected sector of society," Dr Leonard said.  "I am also a member of the International Autism Epidemiology Registry Network, a collaboration which aims to investigate antenatal and perinatal determinants of autism spectrum disorders by pooling population data."

Dr Leonard's group has already provided new data on the likely survival, subsequent health and functional ability for babies born with Down syndrome - information crucial to parents and health professionals.

Their international register of Rett syndrome, InterRett, is unique in the world in its scope and capacity.  It aims to compile information on the syndrome - a severe neurodevelopmental disorder affecting mainly girls - and optimising methods of displaying this information to the general and clinical community.

And with her colleagues, Dr Leonard will use WA-based population databases to monitor trends in the birth prevalence of autism and intellectual disability to refine understanding of antenatal and postnatal determinants.

Media references

Clinical Associate Professor Helen Leonard  (+61 8)  9489 7700  /  (+61 4) 19 956 946
Liz Chester (Telethon Institute for Child Health Research)  (+61 4) 09 988 530
Janine MacDonald (UWA Public Affairs)  (+61 8)  6488 5563  /  (+61 4) 32 637 716

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