Professor Helen Leonard has qualifications in medicine and public health and is a National Health & Medical Research Council Senior Research Fellow. For twenty years her clinical practice primarily involved the management of children and adults with intellectual disability. Working in this role the major need for epidemiological, clinical and multidisciplinary research in this area became obvious. Over a relatively short research career commencing in 1995, she has taken a leading role in developing a research infrastructure to study intellectual disability generally as well as in relation to those specific disorders, which involve a major burden for the affected child, their family and the community. 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 2300 individuals from 50 countries. She is also a member of an exciting and innovative autism registry collaboration, which provides the infrastructure to undertake pooled analyses of international data, and has recently funded by NIH as a “virtual and global” Autism Centre of Excellence.


  • –present
    Principal Research Fellow, Telethon Kids Institute