COMMUNITY DEVELOPMENT & NEEDS BASED EVALUATION
World-First Transdiagnostic Evaluation.
We need to understand what families dealing with neurodevelopment challenges want and need from hospitals, community supports and other health services.
This project will conduct a world-first transdiagnostic neurodevelopment needs evaluation of families presenting to hospitals and interlinked services. This includes their past experiences, and their current and future interactions.
The system wide evaluation involving qualitative and quantitative information gathering will consider the following:
Child development needs
Child emotional wellbeing, social and behavioural function
Family health needsincluding parental wellbeing.
Hospital-based service needs
This will allow us to then map identified needs onto existing supports and activate or develop the necessary tools that families can be linked to, including the NDIS. The first steps on this project have already been taken funded by the Sydney Children's Hospital Network. We look forward to sharing our progress.
Nurturing & Protecting Family Relationships
One of the key focus areas for us, is ensuring that our research & projects reflect the needs of families. Of the environmental influences affecting child neurodevelopment and mental health, parenting is arguably the most important. Nearly 40% of caregivers of children who face neurodevelopment challenges, report high mental and parenting needs. Many parents also report they little access to appropriate parenting programs.
Evidence-based parenting interventions do exist, however, they can be costly for families and public health systems. This project will aim to deliver a low cost, evidence-based, digital program that would address a huge gap for parents of children with neurodevelopment challenges.
PROGRAMS THAT PLAY IN OUR COMMUNITIES
Working & Playing Together
We know that community-based sport and activities programs are widely embraced and much sought after because of the positive health and well-being outcomes such as inclusion, self-esteem and participation.
We plan on working with Deakin University to support a national roll-out of the successful ALLPlay program developed by Deakin’s Child Study Centre. This is a community-based research and intervention program for children who have disability and neurodevelopment conditions. This trial will rigorously evaluate data collected and build an evidence base to demonstrate the clinical value of social participation. It will also look to answer broader questions about the functioning of parents/carers and children with neurodevelopment challenges.
We are also about to commence a ground-breaking study with the NDIS. Led by the University of Sydney this project will partner with Toll Industries, Macquarie University and Aspect. This important work, an Australian first, will find pathways to allow young people with autism to be matched with the perfect job for them. Work will commence soon.
MAKING DATA WORK FOR FAMILIES
Innovation & Information
Research, treatments and services across neurodevelopment conditions are fragmented. Professional and diagnostic silos means there is not a unified, collaborative or enabling approach to the challenges many families face.
We want to build a national neurodevelopment ‘data lake’ that can be that will deliver the best evidence and support pathways for children. It will have five priorities:
A minimum dataset for all children presenting for diagnosis. The first stage being in hospital (clinically-controlled) environment. Stage two, to be rolled out in community clinics. (Also part of the Needs Evaluation project.)
A client-centred data collection platform to be used for tracking progress and outcomes.
A national neurodevelopment clinical trials registry and platform for participation in a clinical trials.
A national platform to coordinate, process, store and track biological samples that can be used develop personalised approaches for treatment that can be adjusted throughout life.
As well as being a one-of a kind resource with immeasurable value, we believe this is a model that is scalable at a global level.
CLINICAL TRIALS & NEUROSCIENCE
Creating a national trials pipeline
Clinical trials of psychological and medical strategies are rarely able to provide the answers that families need to make decisions about what is best for their child.
By bringing together the nation's leading hospitals and their regional clinics, we want to establish a national pipeline for evaluating new therapies. Our aim is to quickly and efficiently deliver real answers about what supports work, when these supports need to be given, and for which children and families they are best for.
Members of the Neurodevelopment Australia team were the first to show that a medical based intervention could improve social responses in children with neurodevelopment conditions. Our work has recently been extended to include a much larger number of children and new clinical trial methodologies to truly understand who responds to this treatment and why.