This page outlines the application process for researchers to access the Longitudinal Studies datasets. An overview of the process is illustrated below.
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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.
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Application development and submission
If your Expression of Interest is approved and you pay the non-refundable application fee, we will initiate the application process. You will be required to supply some supporting documents to complete the application.
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Application review
Your application will be reviewed by the Access Committee, and we will inform you of the outcome.
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Project implementation
If the application is approved, a Material Transfer Agreement (MTA) is prepared and executed by all parties involved. Access to approved assets is organised by Autism CRC. You begin reporting on the progress of the project, as established by the MTA.
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Post-project implementation
Once your project is complete, data provided must be deleted. Any dataset generated by the project is provided to Autism CRC, to be made available for future research. We work together to disseminate and promote the research.
Guiding Principles of Access
Access to the Longitudinal Studies is underpinned by the following statements:
- The research provides practical and tangible outputs that benefit the community
- The data is used to understand developmental trajectories and outcomes for autistic individuals
- The resources help improve understanding of long-term outcomes 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 Longitudinal Studies data, we suggest familiarising yourself with the studies, the research already undertaken, and the policy that determines whether access is granted.
- To learn more about the studies, visit the project page to review the reports and pulications:
- You can also find a full list of the publications from the studies, on the Publications and outputs page
- To find out the principles behind granting access, read the Biobank and Databank access and data sharing policy
Who can access data and how can the data be used
Oversight of the applications to use Longitudinal Studies 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 Longitudinal Studies in light of overall balance of resources and demand on data.
Anyone may apply to access Longitudinal Studies data through the Autism CRC Access Committee. All applications must be considered and approved by the Access Committee before data 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 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 data from the Longitudinal Studies. These charges contribute to the ongoing maintenance and upkeep of the dataset. The costs in actively managing this asset include:
- Storage and upkeep of data
- 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 follow up or future studies.
All these measures mean that the Longitudinal Studies dataset 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.
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.