About the Genetics of Stuttering Study

Researchers from University College London's Great Ormond Street Institute of Child Health are appealing for adults and children with experience of stuttering, or stammering (past or present) to participate in the UK arm of the Genetics of Stuttering Study.

The study aims to pinpoint the genes that predispose individuals to stuttering. This could revolutionise future research into the causes, and biology of stuttering. The study also looks at the lived experience of stammering, and therapy people have had. This will help inform how support can be improved in the future.

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

Volunteers must:

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

Not based in the UK?

The Genetics of Stuttering study is the UK arm of 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/

If you live elsewhere, 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.

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Who is co-ordinating this study?

The Genetics of Stuttering Study is the UK arm of an international project (The International Genetics of Stuttering Study), involving 15 key investigators at eight sites in the UK, Australia, New Zealand, the USA and The Netherlands.

The UK arm of the Genetics of Stuttering Study is being co-ordinated by researchers at University College London's Great Ormond Street Institute of Child Health.

The International Genetics of Stuttering Study, is being lead by the Murdoch Children’s Research Institute, WEHI, QIMR Berghofer Medical Research Institute, Griffith University and the Max Planck Institute for Psycholinguistics.

Need more information?

Please see our FAQs page, or email ich.speechlanguage@ucl.ac.uk.

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.

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 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.

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.

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 5-15 years, 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.