Adelaide leading the way in childhood disability research

International human genetics expert, Professor Jozef Gécz, has been appointed as the inaugural Chair for the Prevention of Childhood Disability, and will lead a five-year, comprehensive multi-disciplinary research program in Adelaide focused on defining the origins and early diagnosis of childhood disability.

The initial focus of the Chair will be on understanding more about the genetic basis of early childhood learning and movement disabilities, intellectual disabilities, early onset epilepsies, and autism. The research program will also concentrate on the many undiagnosed or hard-to-diagnose disorders. The Chair will expand on the successful work and capabilities of the existing Adelaide Neurogenetics Research Program, established by Professor Gécz from the Robinson Research Institute in 2000 and currently employing 25 staff and students.

The Hon. Leesa Vlahos MP, South Australian Minister for Disabilities and Mental Health, said the new Chair will further build Adelaide’s reputation internationally as a research leader in childhood disability and neurodevelopment.

“Adelaide already has a highly successful history in this area. The first epilepsy gene was found in Adelaide in 1994, and earlier, in 1991 the fragile X syndrome gene was identified here – being the most frequent cause of familial intellectual disability – both discoveries of the Women’s and Children’s Hospital.

“The new Chair and its program will continue to build recognition of our excellence. This activity is borderless, and its benefits are global,” Ms Vlahos said.

Steve Wesselingh, Executive Director of the South Australian Health and Medical Research Institute (SAHMRI), said the new Chair was an important appointment for the State of South Australia, because very few positions – in Australia and internationally – are focusing specifically on these topics.

“Professor Gécz is a leader in his field and this will be a systematic and comprehensive research program. It will lead to improved understanding of the genetic basis of disease, serving as a key reference in the field, and contribute to advances in clinical medicine,” Professor Wesselingh said.

Professor Gécz said that the provision of early and accurate diagnosis of disabilities was the program’s main aim.

“Understanding the cause of a problem is critical, as it ultimately leads to a more inclusive society. We want to make sure that the next generation of children has the best possible start in their early developmental phase; the critical period where a clear diagnosis, early intervention and targeted treatment can make a real difference to their future,” Professor Gécz said.

People with disabilities are among the most marginalised groups in the world, having poorer health outcomes, fewer educational achievements, lower economic participation and higher rates of poverty than other groups.

The Executive Director of the Channel 7 Children’s Research Foundation, Glenn Rappensberg, also welcomed the new appointment.

“It’s estimated by the Australian Institute of Health and Welfare that 1 in 20 children in Australia, by the time they start school, are considered to be ‘developmentally vulnerable’ in one or more criteria of the Australian Early Development Index, which covers physical health and well-being; social competence; emotional maturity; language and cognitive skills; communication skills and general knowledge.”

“This number is significant. If developmental challenges in children are not attended to early, then the impacts can be life-long, requiring a multitude of health and social supports. The end result is that the social and economic cost of disability is high, not to mention the impact on the physical and emotional wellbeing of individuals and their families,” said Mr Rappensberg.

The new Chair has been established under a partnership between the Channel 7 Children’s Research Foundation of South Australia, SAHMRI and the University of Adelaide’s Robinson Research Institute.

“The University of Adelaide greatly welcomes this expanded investment and partnership in Childhood Disability research, which will build capacity in South Australia, accelerating discoveries and their translation to better health for our children through Professor Gecz’s leadership,” said Professor Michael Brooks, Deputy Vice-Chancellor Research, at the University of Adelaide.

“This is an important collaboration between our three organisations, allowing the Chair and its program the capacity to not only build on already successful research, but to also grow and thrive. It would not have been possible without the vision and support of the Channel 7 Children’s Research Foundation,” Professor Wesselingh said.