For researchers

This page outlines how researchers can apply to use the materials and data from the Australian Autism Biobank for approved research purposes.

The Australian Autism Biobank is a long-awaited resource that will aid in increasing our knowledge of the autism spectrum and co-occurring conditions. We had almost 3,000 autistic and non-autistic children and adults participate from across Australia. From our participants we collected 4,500 biological samples, as well as behavioural and questionnaire data. The majority of participants were primary school aged. From our child participants, we collected samples for blood, urine, stool and hair. We also collected blood samples from parent participants.

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What research is being done?

The Australian Autism Biobank has approved a variety of projects across different research areas relating to autism including better and earlier autism diagnosis (including subtyping), motor development, sensory subtyping, behavioural characteristics of females on the spectrum and a range of co-occurring conditions and health issues such as anxiety, gastrointestinal disorders, sleep disorders and oral health. As research publications and other outputs become available they will be listed below.

  1. Yap, C.X., Alvares, G.A., Henders, A.K. et al. (2021). Analysis of common genetic variation and rare CNVs in the Australian Autism Biobank. Molecular Autism 12, 12 (2021). doi.org/10.1186/s13229-020-00407-5
     
  2. Alvares, G.A., Australian Autism Biobank team. (2019) Demographic and Clinical Characteristics of Participants in the Australian Autism Biobank [Poster]. International Society for Autism Research 2019 Annual Meeting, 1-4 May, Canada. International Society for Autism Research. 
     
  3. Alvares, G.A., Dawson, P.A., Dissanayake, C., Eapen, V., Gratten, J., Grove, R., Henders, A., Heussler, H., Lawson, L., Masi, A., Raymond, E., Rose, F., Wallace, L., Wray, N.R., Whitehouse, A.J.O.; Australian Autism Biobank team (2018). Study protocol for the Australian Autism Biobank: an international resource to advance autism discovery research. BMC Pediatr. Aug 27;18(1):284. doi: 10.1186/s12887-018-1255-z
     
  4. Alvares, G. A., Mekertichian, K., Rose, F., Vidler, S., & Whitehouse, A. (2021, August 29). Parent-reported oral health and dental care experiences in children on the autism spectrum: Associations with clinical phenotypes. https://doi.org/10.31219/osf.io/zg5tr

What data and samples are available?

More detailed information on sample availability and categories is available to approved researchers through the process outlined below.

Request application to access the Australian Autism Biobank

Data available from the Australian Autism Biobank
  Data Mother* Father* Child on spectrum Sibling Non-autistic, non-related child

Diagnostic Assessments

Autism Diagnostic Observation Schedule – 2 (ADOS)
(Module 1, 2, 3, or 4)

   

1112

   

The Developmental, Diagnostic, and Dimensional Interview (3DI)

   

772

   

Cognitive Testing

Mullen Scales of Early Learning (MSEL) (2 – 5 yrs 11 months) / Wechsler Intelligence Scale for Children – Fourth Edition
(WISC-IV) (6 – 17 years)

   

840

235

146

Wechsler Abbreviated Scale of Intelligence – Second Edition
(WASI-II)

954

551

     

Questionnaires

Vineland Adaptive Behaviour Scales Second Edition (Vineland II)

   

867

   

Family History Questionnaire (FHQ)

   

1013

   

Child Development Questionnaire (CDQ)

     

235

129

Children’s Communication Checklist (CCC)

   

757

   

Communication Checklist – Adult (CCA)

815

749

     

Broad Autism Phenotype

979

955

     

Social Responsiveness Scale

     

175

123

Short Sensory Profile – 2

   

700

   

Physical / dietary characteristics

Food Frequency Questionnaire (Australian Eating Survey)

   

173

74

84

Tanner scales

   

269

85

27

Clinical Proforma

   

1121

252

149

Biological datasets

Genotyping data on Global Screening Array v1 and v2 BeadChip

752

504

887

218

116

Metagenomics from stool with sequencing performed by Microba Life Sciences Limited using the Nextera XT Library Preparation Kit and sequenced on the Illumina NovaSeq6000 with 2 x 150bp paired-end chemistry

   

99

51

48

Methylation data from DNA extracted from buffy coat (blood) on Infinium MethylationEPIC BeadChip

   

255

125

68

Samples available from the Australian Autism Biobank
Samples collected Mother* Father* Child on spectrum Sibling/s Non-autistic, non-related child

Blood

954

641

869

215

117

Urine

   

302

142

127

Faeces

   

211

95

81

Hair

   

338

165

137

*The Australian Autism Biobank recruited a number of multiplex families (families with more than one child on the spectrum). Parent measures are counted for the number of times they are linked to a child in the Biobank. If a parent has three children in the AAB, then their data will be counted and recorded three times, once against each child's record.

Frequently Asked Questions

We recommend that you first contact the Australian Autism Biobank Administrator to discuss your proposed research prior to submitting an application. We also recommend reading the Study protocol for the Australian Autism Biobank: an international resource to advance autism discovery research. You can request and application form from the link below. This will trigger an email to confirm your details and send you an application form to complete and submit. Once your application has been considered by the Autism CRC Access Committee, the Administrator will advise you as to the outcome of your application. Final access and approval is subject to the decision of the Access Committee in line with current policy and guidelines.

Yes. There are costs associated with accessing materials and data from the Biobank. These charges contribute to the ongoing maintenance and upkeep of the Australian Autism Biobank asset. The costs in actively managing this asset include:

  • Storage and upkeep of data and samples
  • Receiving, considering, supporting and tracking applications
  • Curating data analysis from approved projects
  • Incorporating new and updated datasets, as appropriate, in the current dataset
  • Maintaining a register of participants for recontact for Australian Autism Biobank follow up or future studies.

All these measures mean that the Australian Autism Biobank will continue to grow and provide an evolving and sustainable dataset for years to come. By continually investing in the upkeep and curation of the dataset, the original data and the new additions are always ready to use. Data access is on a cost-recovery basis, and also requires an appropriate Materials Transfer Agreement for commercial or non-commercial research.

Download a copy of the Australian Autism Biobank: Fee schedule here

Oversight of the applications to use Australian Autism Biobank data is by the Autism CRC Access Committee. This committee consists of at least six people appointed by Autism CRC, including at least one member of the autistic or broader autism community.

The Committee meets bi-monthly, on the second Tuesday of February, April, June, August, October and December of each year.

The Autism CRC Access Committee will co-opt scientific advisers with expertise related to the specific project under evaluation where required. This committee will assess each application with respect to its:

  1. scientific merit, feasibility and priority of use of the material requested, and
  2. the impact on the Australian Autism Biobank in light of overall balance of resources and demand on specimens and data.

Access to data will only ever be granted by this committee when researchers have approval from an appropriate Human Research Ethics Committee and where the Autism CRC Access Committee can identify a clear potential benefit of the proposed research to the autistic and autism communities.

Anyone may apply to access Australian Autism Biobank data through the Autism CRC Access Committee. All applications must be considered and approved by the Access Committee before data or material can be shared.

Data access is subject to the Biobank and Databank access and data sharing policy. Projects must be approved by the Autism CRC Access Committee in addition to having institutional ethical clearance. Projects will be considered on their scientific merits and benefit to the community.

All Essential Participants of the Autism CRC must also apply through Autism CRC Access Committee approval process.

This committee consists of at least six people appointed by Autism CRC, including at least one member of the autistic or broader autism community.

The Australian Autism Biobank and the Autism CRC are committed to creating end-user driven research from the Australian Autism Biobank. The Autism CRC has established the Australian Autism Research Council (AARC) to identify autism research priorities in Australia. In 2019 the AARC conducted a community consultation and identified 10 priority areas for autism research in Australia (read the 2019 Research Priorities report). In 2020, the AARC began facilitating focus groups around 5 of these priority areas, including communication, justice, employment, education and health and wellbeing. Initially, the Australian Autism Biobank will look to communicate the outcomes of the AARC working groups to applicants once available with a view to encouraging applications guided by community priorities.

Contact

For more information, contact the Australian Autism Biobank at biobank@autismcrc.com.au.

Acknowledgements

Autism CRC would like to thank the children on the autism spectrum, their siblings and parents and other children who generously contributed their time and data/samples for the Australian Autism Biobank.

Autism CRC acknowledges and thanks the various sites and their staff who supported the establishment of the Australian Autism Biobank: Telethon Kids Institute, University of NSW, La Trobe University, Mater Medical Research Institute, Institute for Molecular Biosciences: University of Queensland, Wesley Medical Research, University of Western Australia, Pathwest and Sydney Children’s Hospital Network, Andrew Whitehouse, Dora Abbondanza, Gail Alvares, Erin Beattie, Jolene Berry, Vandhana Bharti, Grace Christou, Dominique Cleary, Paul A Dawson, Melanie De Jong, Cheryl Dissanayake, Kendra Dommisse, Valsamma Eapen, Mira Frenk, Jacob Gratten, Rachel Grove, Claire Hafekost, Maryam Haghiran, Alexis Harun, Nicole Hayes, Anjali Henders, Honey Heussler, Helen Holdsworth, Anneliese Hopkins, Anna Hunt, Rachel Jellett, Feroza Khan, Lauren Lawson, Deborah Lennon, Jodie Leslie, Anne Masi, Nisha Mathew, Tiana McLaren, Candice Michael, Melanie Muniandy, Melissa Neylan, Michaela Nothard, Brooke Peden, Mridu Radhakrishnan, Ola Rajapakse, Emma Raymond, Felicity Rose, Natalie Silove, Ashley Thomson, Leanne Wallace and Naomi Wray.