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:
- Determine the return rate for follow-up study by assessing:
- The rate of previous participants who consented to recontact
- Percentage of study population who consented to be recontacted and who are able to be located
- Percentage of study population who can be contacted who consent to participate in follow-up.
- Obtain follow-up data on consenting participants for blood and/or saliva, questionnaires and face-to-face assessments, and pilot data for eye-tracking.
- 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.
- Valsamma Eapen, University of New South Wales