Australian Autism Biobank follow-up cohort pilot study

This project aimed to determine the feasibility of undertaking a longitudinal study with a subset of participants from the Australian Autism Biobank, which has created a large Australian repository of phenotypic, genotypic and biological information of autistic individuals and their parents. Creating a second time point with participants in the initial Biobank project will allow for the longitudinal trajectory (change in clinical features over time) and the stability of a biomarker through development to be investigated. This information would help facilitate better understanding of the course and outcome and the factors that determine such outcomes.

Data on the feasibility of a longitudinal follow-up would be useful for both the large-scale grant applications required for the continuation of the project outside Autism CRC funding and to attract industry investment.

This project set out to:

  1. Determine the return rate for follow-up study by assessing:
    1. The rate of previous participants who consented to recontact
    2. Percentage of study population who consented to be recontacted and who are able to be located
    3. Percentage of study population who can be contacted who consent to participate in follow-up.
  2. Obtain follow-up data on consenting participants for blood and/or saliva, questionnaires and face-to-face assessments, and pilot data for eye-tracking.
  3. Comparison of sample quality obtained from Biobank 1.0 (transport prior to processing) and samples processed onsite.

Despite the large percentage of participants agreeing to be recontacted about future studies, achieving a high return rate for follow-up assessment most likely requires the face-to-face follow-up to be aligned with a clinical service (e.g. follow-up at start of school or for an assessment that would result in a report for National Disability Insurance Scheme (NDIS) or other purposes). The study developed a number of key recommendations to maximise participation in future follow-up studies.

This project has been completed.

Project Leader(s)
  • Valsamma Eapen, University of New South Wales
Project code
1.059RS