Australian Autism Biobank follow-up cohort pilot study
The Australian Autism Biobank is a long-awaited resource that will aid in increasing our knowledge of the autism spectrum and co-occurring conditions. 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.