September  15 - 17,  2016

Telethon Kids Institute, University of Western Australia, Perth, Western Australia

 Associate Professor Helen Leonard has qualifications in medicine and public health and is a Principal Research Fellow at the Telethon Kids Institute in Western Australia. For twenty years her clinical practice involved the management of children and adults with intellectual disability and rare diseases. During this time the major need for epidemiological, clinical and multidisciplinary research in this area became obvious. She has therefore taken a leading role in developing a research infrastructure to study intellectual disability generally as well as specific disorders like Rett syndrome and Down syndrome. In 1992 she first established the internationally unique population-based Australian Rett Syndrome Database and has maintained this register since that time. In 2002 she set up the International Rett Syndrome Foundation Phenotype Database, InterRett, which has now collected data on over 2000 individuals from 48 countries.

Since commencing active research in 1998, she has co-authored over 200 journal articles as well as 12 book chapters and eight reports. On the topic of Rett syndrome she is one of the most highly published authors over the last decade. Her strong collaborative approach has been evident throughout her career. She has previously used a Delphi approach to bring together from across the globe experts from different specialties to develop guidelines for clinical management. 


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