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Australian Autism Biobank

Together, discover and learn more.

Welcome to Autism CRC’s Australian Autism Biobank. In this short video we’ll tell you:

  • why it was created
  • what it is
  • how it works
  • and the many benefits for autistic people, their families and carers.

Autistic people face significantly worse physical and mental health outcomes than the general population.

Autism CRC created the Australian Autism Biobank to help advance our understanding of how biological and environmental factors are linked to autistic health and wellbeing.

We know these factors are important to all aspects of care, from diagnosis through to ageing. Developing a better understanding will lead to more appropriate and effective supports for autistic people.

A biobank safely stores ethically-collected participant data and biological samples for use in approved research.

The Australian Autism Biobank is Australia’s largest collection of data and samples from autistic children and their families.

It includes:

  • biological samples and data
  • including whole genome sequencing
  • and behavioural, socio-economic, and health data from participant surveys and questionnaires

Almost 3,000 autistic and non-autistic children and their parents from across Australia kindly contributed to the Biobank.

Recruiting research participants and collecting samples and other information can be time consuming and costly for both the participants and research organisations.

It took more than three years to recruit participants and collect samples and data for the Australian Autism Biobank, but these can then be used for countless studies, now and into the future.

Each time a study is completed, new data generated is added back into the Biobank, so that it continues to grow and evolve for the benefit of future generations.

Projects using collections from the Australian Autism Biobank have already resulted in findings that are helping to improve the health and wellbeing of autistic people, with many more projects underway. These studies are helping us to better understand autism and co-occurring conditions in areas such as:

  • diet and gut health
  • motor development
  • sleep
  • anxiety and
  • oral health.

The Australian Autism Biobank is an asset to the autistic community and must be appropriately protected. For example, researchers are not given access to information that identifies Biobank participants, and all data and samples are stored in secure Australian-based facilities with restricted access.

The Autism CRC Access Committee considers all Biobank access applications. The committee consists of at least six people and includes researchers, biobank experts and at least one member of the autistic community.

Access applications must also be approved by a Human Research Ethics Committee before any samples or data are shared with researchers.

Autism CRC encourages research guided by community-driven priorities to ensure outcomes that directly help autistic individuals and their families.

The Australian Autism Biobank is just one of the ways Autism CRC is committed to improving the quality of life, health and wellbeing of autistic individuals across the lifespan and the spectrum.

So a heartfelt thankyou to all our biobank participant families. Your contributions are helping to fulfil our vision – autistic people with quality of life and opportunity.

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