2019 has been a busy year for the Genetics of Stuttering Study! We have ben continuing to recruit participants throughout the year, have collected heaps of data, and have been working on lots of behind the scenes planning! As the year draws to a close, we thought it a good time to provide an update on how the study is progressing, and our plans into the new year.
Continuing to recruit!
In September, we had a great boost to recruitment, as the study made several appearances in the media. Members of the Genetics of Stuttering team featured on radio, television and in news articles across Australia. We were also lucky to have study participant Sian and her mum Azelene fly over to Melbourne to meet the team and share her inspiring story! See here for more.
Over 1000 people who stutter have so far registered for the study. We are still continuing to recruit throughout 2020, so if you have ever experienced stuttering, please consider volunteering today!
Who has volunteered so far?
Mostly boys and men!
Up to now, about 7 in 10 of those who have signed up to the study are male. This is broadly what we would expect, as we know that stuttering is more common in males (although we still do not know why this is!).
A culturally diverse group!
So far, we have only been able to recruit participants who are currently living in Australia. Whilst the majority of our participants were born in Australia, approximately 1 in 4 told us they were born overseas, in one of the 57 countries shown on the map!
People with persistent stuttering.
Anybody who has ever experienced stuttering may be eligible to take part in our study; whether you stuttered as a child and have now recovered, or if your stutter has persisted into adulthood, we encourage you to volunteer! The majority of people who stutter who have signed up so far seem to currently stutter, with around 84% reporting they have experienced stuttering within the past 12 months.
What is the team working on currently?
If you have completed our online questionnaire, you will know we have collected a lot of information from our participants! We are currently examining the responses submitted so far, to gain more insight into the experiences of people who stutter.
What about genetics?
We are excited to share that we have now received the first batch of genetic data, for the study! For each participant who has been genotyped, we now have information for around 700,000 genetic variants!
These genetic data require a lot of cleaning and analysis - we shall be getting started with this in the new year. See our brief explainer for how we plan to find which genetic variants might be playing a role in stuttering.
Up to now, our recruitment has focussed on Australia.
Last week, our colleagues in the Netherlands launched the Dutch language version of this study, with recruitment focussed in the Netherlands and Belgium. Please see http://www.geneticavanstotteren.nl/ for more information.
In the new year, one of our main aims is to open up recruitment to even more people internationally. Watch this space for details of recruitment in other countries coming soon!
Merry Christmas and a Happy New Year!
Finally, to all our participants and families, the genetics of stuttering team wish you a happy Christmas and we look forward to sharing more study updates in the new year!