Saliva samples will be sent to QIMR Berghofer Medical Research Institute (Brisbane, Australia), where the lab will will extract DNA from the saliva samples. The DNA will then be sent to a lab in the Netherlands for genotyping. Your coded DNA will be returned to researchers at WEHI (Melbourne), for analysis. Any DNA remaining after processing will be sent to the the University of Melbourne and stored for potential use in future, related genetic studies.

Your personal details, questionnaire data, and genetic information will all be stored in separate, firewalled password protected databases, and the only link between your personal details and your other data is your participant identification number. Linking your personal details and the other datasets using this number is restricted to members of the data collection research team.

Internal access to these databases and samples are compartmentalised - the data collection team can only access your personal and survey information, analysts can only access your survey information and genetic data, and laboratory staff can only access your biosample and DNA [the latter two groups only have your ID number]. This compartmentalisation protects the confidentiality of participants. When results are published they are done as aggregated data altogether, no individual results are included.

This research is not designed to provide any clinical results to participants. The study does not undertake individual analysis of each sample provided, but rather will undertake an overall comparison of genetic markers on all samples provided.
If you have a personal interest in obtaining a genetic test on your DNA, we suggest you consider contacting a genetic testing entity which can provide such testing.

The analysis we conduct on a participant’s saliva sample will not tell us about individual participant’s health status, ancestry or predict health outcomes. Researchers are not looking for these particular genes in their analysis; rather they are searching for groups of common genes involved in stuttering from a large group of people.

We certainly want to feedback as much as possible to participants about the study, so we provide all participants with an update of the project's progress and results via email at the end of each data collection year.

Furthermore, when we publish the results from the research, any genes identified in the development, course or treatment of stuttering will be publicly available in a scientific journal.

Speech pathologists are trained to assess, manage and support children and adults with stuttering.

If you are based in Australia you can find a qualified speech pathologist near you by visiting Speech Pathology Australia's website.

If you are based in New Zealand, the Stuttering Treatment and Research Trust is a great resource for finding out more about stuttering, and speech therapy.

For a more comprehensive list of services, please see our useful links page.