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.

A graphical overview of the application process.

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
Diagnostic Assessments	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
Nucleic Acids	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.

To learn more about the establishment of the Australian Autism Biobank, read Study protocol for the Australian Autism Biobank: an international resource to advance autism discovery research
To find out what research has been undertaken, view our Publications and outputs page
To find out the principles behind granting access, read the Biobank and Databank data and access sharing policy

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:

scientific merit, feasibility and priority of use of the material requested, and
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