About the 'Genetics of Stuttering Study'

Researchers from the NHMRC Centre of Research Excellence in Speech and Language are calling for 3,000 adults and children with experience of stuttering (past or present) to volunteer for the Australian and New Zealand arms of world’s largest ever ‘Genetics of Stuttering Study’.

Recruitment for the study is now closed. Thank you to everyone who took part!

The study aims to pinpoint the genes that predispose individuals to stuttering. This could revolutionise future research into the causes, and biology of stuttering.

Volunteers must:

Be aged 5+ in Australia, or aged 7+ in New Zealand.
Currently stutter or have a history of stuttering.

Not based in Australia or New Zealand?

No problem - you are very welcome to sign up to our study; however, depending where you live, 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.

The Dutch arm of this study is now recruiting participants in the Netherlands and Belgium! Please see http://www.geneticavanstotteren.nl/ for more information.

We will be starting recruitment drives in other countries very soon - watch this space!

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Who is co-ordinating this study?

The study involves 15 key investigators at eight sites in Australia, New Zealand, the UK, the USA and The Netherlands.

The Murdoch Children’s Research Institute, WEHI, QIMR Berghofer Medical Research Institute, Griffith University and the University of Melbourne are coordinating the Australian arm of this international study.

The University of Otago, Wellington is co-ordinating the New Zealand arm of the study.

Need more information?

Please see our FAQs page, or email geneticsofstuttering@mcri.edu.au.

How to participate

Participants who choose to volunteer for the ‘Genetics of Stuttering Study’ will be contributing to a global effort to unravel the genetics of stuttering, and may eventually learn more about their own potential genetic make-up with regard to stuttering.

Participation in the study is free and easy – volunteers complete a 10-minute online survey and optionally record a short sample of their speech. Those who qualify will be invited to provide a saliva sample for DNA analysis.

Study participation involves:

Reading and understanding an online study information sheet;
Providing consent for collection of data for current and future study purposes;
Submitting contact information; and
Completing an online survey.

For Australian participants aged under 18 years, and New Zealand participants aged under 16 years, the online survey must be completed by a parent or guardian.

Survey respondents who complete the survey, will be asked to donate a saliva sample, for DNA analysis.

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

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

QIMR Berghofer Medical Research Institute (Brisbane, Australia) will extract DNA from the saliva samples. Any DNA remaining after processing or analysis will be sent to the University of Melbourne and stored for potential use in future, related genetic studies.

Analysis will be led by Professor Bahlo’s group at the Walter and Eliza Hall Institute of Medical Research, in Melbourne.

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.

Children and young people aged 5-17 years in Australia, or aged 7-15 years in New Zealand, wishing to volunteer for the study must be supervised by a guardian. Children under five years of age in Australia, children under seven years of age in New Zealand, 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.

About the MCRI Centre of Research Excellence for Speech and Language

Murdoch Children's Research Institute (MCRI) is the largest child health research institute in Australia, and among the world’s top five institutes.

MCRI comprises 1,900 talented researchers dedicated to making discoveries to prevent and treat childhood conditions.

MCRI research is informed by the problems facing its patients, but it also means when a discovery is made, this is quickly transformed into practical applications.

The Centre of Research Excellence in Speech and Language is an international collaboration of experts in the fields of speech pathology, paediatric neurology, neuroscience, genetics and bioinformatics.

The Centre’s core vision is to transform speech pathology practice by identifying, understanding and targeting the underlying causes of developmental speech and language disorders.

The Centre is funded by the NHMRC up until December 2021.

Thank you to all participants!