Game changing national summit for children with neurodevelopment disorders

Leading experts from universities and health districts across Australia will attend a national summit on neurodevelopmental disorders to establish a network of clinicians, researchers and treatment options that will transform healthcare outcomes
The summit will bring together leading neurodevelopment experts and researchers to form a national network that will transform the way children and their families are assessed, diagnosed, treated and supported.

“We are bringing the best brains in the country together so we can support families and caregivers in a holistic way, from the minute a developmental need is identified or a diagnosis is made. We’re not so much interested in disorder-labelling but making sure we provide a framework to identify developmental and mental health needs for the child and family and evidence for an adequate and appropriate response to that need,” said Professor Adam Guastella, the Michael Crouch Chair in Child and Youth Mental Health at the Sydney Children’s Hospital and University of Sydney.

The national summit will be at the University of Sydney’s Brain and Mind Centre with leading researchers from hospitals, universities and health districts across Australia. The summit will establish a network of clinicians, researchers, and treatment options that will transform healthcare outcomes in the next 10 years as well as find significant long-term cost-savings.

“Failing to coordinate and support families adequately is costing the Australian Government tens of billions of dollars each year and resulting in more limited outcomes from programs such as the NDIS,” said Professor Guastella.

One of the key discussions will be to establish partnerships to provide innovative ways for researchers to store and share critical clinical data that can be used to revolutionise research, assessment and diagnosis, treatments and community supports, especially for families who live outside metropolitan areas.

“We want to build from the ground up approaches to research that have reach into communities and regional centres currently isolated from national research networks. An inclusive network that reaches the largest number of kids with neurodevelopmental disorders in the country,” explained Professor Christel Middeldorp, Child Psychiatrist from Children’s Health Queensland.

It is expected that in the first step of a digital strategy, a series of national hubs focusing on biomarkers and clinical trials, parent support, and maximising community participation, will be formed.

“Our experts are at the coalface every day providing evidence-based care to the most complex cases, many of whom are from very diverse backgrounds. We need to be able to share our information to support as many children as possible,” said Professor Russel Dale, Head of Kids Neuroscience Centre at the Children's Hospital at Westmead. 

What you need to know about neurodevelopmental disorders

  • The first 2000 days of life are critical to neurodevelopmental disorders where the right support early in life provides the best opportunity to improve lifelong outcomes.
  • Approximately one in ten children in Australia meet criteria for a neurodevelopmental disorder. The most common of these are Autism, Attention Deficit Hyperactivity Disorder, Cerebral Palsy, Tourette’s Syndrome.
  • Over 80% of these children will meet criteria for multiple diagnoses. 
  • Anxiety and depression are extremely common in children with neurodevelopmental problems as well as their caregivers.
  • Improvement in services is likely to have a significant cost savings benefit over the long term for individuals, families and governments.
  • The cost of failing to coordinate and support families adequately is estimated to cost the Australian Government in the 10s of billions of dollars each year, with autism alone estimated at 7.1 billion dollars.
We need a network that will connect families seamlessly to community and clinical services and improves their everyday lives
Professor David Coghill, Chair of Developmental Mental Health, Royal Children’s Hospital Melbourne