Working towards a shared framework

Working towards a shared framework in the diagnosis of Neurodevelopments Disorders in Australia: A Gap Analysis

What is this research about?

Neurodevelopmental disorders (NDD) are conditions that affect the brain and nervous system during the early developmental periods in utero, and during infancy and childhood. Specific disorders that fall under the NDD term include (but are not limited to):

• Autism Spectrum Disorder (ASD)
• Fetal Alcohol Spectrum Disorder (FASD)
• Attention Deficit Hyperactivity Disorder (ADHD)
• Cerebral Palsy (CP)
• Intellectual Disability (ID)

We are currently aware that there are Australian clinical guidance documents for diagnosing a range of complex NDDs are either under development or recently published. Currently there are no formal systems in place to coordinate, evaluate or review these clinical guidance documents for NDD diagnosis. This may lead to lower rates of adoption, confusion among consumers and clinicians, and poor quality assessment outcomes. In addition, a lack of coordination between diagnostic procedures and guidance documents may lead to time and cost inefficiencies that create significant consumer and system burden.

This project aims to evaluate the ideal and actual interaction between all existing clinical guidance documents for NDD diagnosis in Australia, which will allow a gap analysis to occur. The WA clinical community and families will be consulted in order to understand the challenges and benefits of developing a shared framework. This represents a first step towards building a case for Commonwealth health or disability government funding for a large-scale national project focusing on examining the potential benefits of integrated diagnostic assessment and unified models of care across NDDs.

This project involves two parts and each part will be guided by a Steering Group of clinical experts and community members with lived experience:

1. Review of existing Australian and international clinical guidance documents for NDD diagnosis to explore similarities and differences between guidelines.
2. Online or workshop consultations with clinical experts and community members. The purpose of this consultation is to identify current gaps in knowledge about NDD diagnosis, as well as potential benefits and challenges which may come from having a shared framework to guide the process of diagnosing one or more NDDs in children.

There is a large Stakeholder Reference Group for this project that has representatives from several Western Australian government departments, non government organisations, and community representatives.

Funder of this project
Telethon Kids Institute

Read more information about the Think Big Neurodevelopmental Disorders Group