Application process | Australian Autism Biobank

This page outlines the application process for researchers to access the Australian Autism Biobank. An overview of the process is illustrated below.

  1. Expression of Interest

    Submit an Expression of Interest to access assets via an online form, including an outline of your proposed research. We will contact you to discuss details of your project, and the access process.

  2. Application development and submission

    If your Expression of Interest is approved and you pay the non-refundable application fee, we will provide you with access to our online portal to complete and submit your application. You will be required to supply some supporting documents to complete the application.

  3. Application review

    Your application will be reviewed by the Access Committee, and we will inform you of the outcome.

  4. Project implementation

    If the application is approved, a Material Transfer Agreement (MTA) is prepared and executed by all parties involved. Access to approved Biobank project assets is organised by the Biobank team. You begin reporting on the progress of the project, as established by the MTA.

  5. Post-project implementation

    Once your project is complete, data provided must be deleted and any remaining biological samples returned or destroyed as directed by Autism CRC. Any dataset generated by the project is provided to the Biobank, to be made available for future research. We work together to disseminate and promote the research.

What data is available

The following tables give a brief overview of the samples availability and categories. More detailed information can be provided during the application process.

DisplayHide data and samples table

Table 1: Phenotypic data.

Category

 Dataset Short name Mother* Father* Proband Sibling Control

Diagnostic Assessments

Autism Diagnostic Observation Schedule – 2 (Mod 1 -4)

ADOS

    

1125

1

  

The Developmental, Diagnostic, and Dimensional Interview

3DI

    

785

    

Cognitive Testing

Mullen Scales of Early Learning (2 – 5 yrs 11 months)

MSEL

    

419

84

85

Wechsler Intelligence Scale for Children – 4th ed (6-17 years)

WISC

    

436

151

61

Wechsler Abbreviated Scale of Intelligence – 2nd Edition

WASI-I

726

457

      

Questionnaires

Vineland Adaptive Behaviour Scales 2nd Edition

VABS

    

878

    

Family History Questionnaire

FHQ

    

1025

235

129

Child Development Questionnaire

CDQ

          

Children’s Communication Checklist

CCC

    

772

    

Communication Checklist – Adult

CCA

650

608

    

28 mothers, 26 fathers

Broad Autism Phenotype

BAP

756

738

    

115 mothers, 115 fathers

Social Responsiveness Scale

SRS

    

50

175

123

Short Sensory Profile – 2

SSP

    

713

    

Early Concerns

EAC

    

423

    

Oral Health Survey

OHS

    

153

    

Physical / dietary characteristics

Food Frequency Questionnaire (Australian Eating Survey)

FFQ

    

180

75

84

Tanner scales

TS

    

271

90

27

Clinical Proforma

CP

    

1103

252

149
Table 2: Genomic data.

Category

 Dataset Short name Source Mother* Father* Proband Sibling Control

DNA related

Whole Genome Sequencing

WGS

  

437

437

530

135

  

Genomic Wide Association Study & Single Nucleotide Polymorphism

GWAS/SNIPS

  

752

504

887

218

116

Metagenomic

  

Stool

    

100

50

49

Methylation

  

Buffy coat

    

255

125

68

Polygenic scores

PGS

      

887

217

117
Table 3: Other data.
Dataset Source Mother* Father* Proband Sibling Control

Cortisol

Hair

    

356

162

131

Melatonin

Urine

    

219

    
Table 4. Biological samples.

Category

 Samples Mother* Father* Proband Sibling Control

Blood

Plasma

558

374

798

217

117

Serum

586

394

698

218

78

Red Blood cells (RBC)

586

394

677

215

116

Whole blood

584

391

659

213

115

Nucleic Acids

DNA

584

529

659

136

0

RNA (Paxgene)

131

89

150

55

9

Other

Urine

    

316

140

125

Stool

    

215

95

78

Saliva

4

2

18

10

6
*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.

Guiding Principles of Access

Access to the Australian Autism Biobank’s resources is underpinned by the following statements:

  • The research provides practical and tangible outputs that benefit the community 
  • The data is used to build a baseline for the development of tools, new and enhanced evidence-based practice that support autistic people with quality of life and opportunities
  • The resources used help to improve the understanding of the health and wellbeing of autistic individuals and develop new ways of making a meaningful impact in these areas.

Before you start the application process

If you are considering applying for access to the Biobank, we suggest familiarising yourself with the establishment of the Biobank, the research already undertaken, and the policy that determines whether access is granted.

Who can access data and how can the data be used

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.

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.

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.

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 past Participants, Members and Affiliates of the Autism CRC must also apply through Autism CRC Access Committee approval process.

Costs involved in application and access

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. 

These costs are outlined in the Australian Autism Biobank: Fee schedule.

Download Australian Autism Biobank: Fee schedule

Expression of Interest

If you have reviewed the information on this page and the linked resources and documents, you can start the process by submitting an Expression of Interest.

Access Expression of Interest Form