FAQs

Participation in the Genetics of Stuttering Study

Who can participate in the ‘Genetics of Stuttering Study’?

Volunteers must:

Be aged 5+
Currently stutter, or stammer or have a history of stuttering.

Children and young people (aged 5-15) wishing to volunteer for the study must be supervised by a guardian.

Children under five years of age, and those with stuttering resulting from an acquired neurological disorder (such as a traumatic brain injury, or caused by a tumour), will not qualify for the study.

Why should I participate in the ‘Genetics of Stuttering Study’?

Can I participate in the ‘Genetics of Stuttering Study’ if I am not in the UK?

The Genetics of Stuttering study is an international project examining the genetics of stammering / stuttering.

We are also recruiting in a few other countries; please visit your country's site for more information and to sign up:

Australia and New Zealand: https://www.geneticsofstutteringstudy.org.au/

Netherlands and Belgium (Dutch language): http://www.geneticavanstotteren.nl/

We will be starting recruitment drives in other countries soon, check back here for updates.

I live somewhere else - can I still sign up?

You are still very welcome to sign up to our study; however, we may not be able to collect a saliva sample for genetic analysis just yet. Even if you are not able to provide a saliva sample, the information you provide via the questionnaire will still be valuable to our ongoing work to better understand the experiences of people who stutter.

Will I get paid for participating in the ‘Genetics of Stuttering Study’?

**What is the process of the Genetics of Stuttering Study?**

What does the ‘Genetics of Stuttering Study’ involve?

What happens after I take the survey?

After survey completion, study participants will be invited to record a short sample of their speech, which will be assessed by qualified speech pathologists. This speech recording is entirely optional, and is not a requirement for participation.

After completion of the survey, participants will also be asked to donate a saliva sample for DNA analysis.

Researchers will then send a saliva collection kit together with a pre-paid return envelope, to participants.

Study researchers will analyse all saliva samples collected from select participants to investigate any specific genes that may be associated with stuttering.

Do I have to leave a speech sample?

It is not compulsory to leave a speech sample, however we are very appreciative of all who do. We know that stuttering is highly variable and that there are some times in the day, or situations, where people are more or less fluent in their speech. We also appreciate that some of our participants may have a very mild speech disfluency or that they may have even recovered from stuttering. We welcome all participants to record a speech sample, even if you are fluent during that sample.

Confidentiality and genetic data storage

Is the information I give you kept confidential?

Study participation is strictly confidential. All patient information provided will be maintained in accordance with the Commonwealth Privacy Act (1988) and National Health and Medical Research Council (NHMRC) guidelines.

How will you use the survey, biological and genetic information data I give you?

Saliva samples will be sent to University College London, where the lab will will extract DNA from the saliva samples for genotyping. Your coded DNA will be sent to researchers at WEHI (Melbourne, Australia), for analysis. Any DNA remaining after processing will be destroyed.

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.

Can I access my genetic data?

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.

Will the saliva sample tell you about my ancestry or health?

Will I get my results from the study?

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.

Where can I go for stuttering assessment, treatment or support?

Recruitment for the study is now closed.

Thank you to everyone who took part!

Participation in the Genetics of Stuttering Study

**What is the process of the Genetics of Stuttering Study?**

Confidentiality and genetic data storage

Thank you to all participants!