NEW SPEECH TRACKER: SETBP1 haploinsufficiency disorder Speech & Language Study
Our second international SETBP1 haploinsufficiency disorder speech and language study is currently enrolling!! This study builds on a previous SETBP1 study showing that speech and language is a core developmental challenge for children with SETBP1 haploinsufficiency disorder. In this new study, the speech team at the Murdoch Children’s Research Institute are examining speech and language over time. This data will help all of us better understand prognosis and help develop more targeted speech therapies for individuals with SETBP1 haploinsufficiency disorder.
If you or your child have SETBP1 haploinsufficiency disorder, please consider signing up for this speech and language skills natural history study in individuals with SETBP1 variants.
What is involved?
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- Send an email to speechtracker@mcri.edu.au. OR use the following QR code to register:
- Complete brief online surveys of language skills once a year (families who participated in the first SETBP1 speech and language study will be linked to this study and will have less surveys to complete).
- Complete a quick 15 minute speech task from home 3x a year.
- Send an email to speechtracker@mcri.edu.au. OR use the following QR code to register:
Who leads the study?
Prof. Angela Morgan PhD
NHMRC Practitioner Fellow
Lead, Speech & Language Group
Murdoch Children’s Research Institute (MCRI)
University of Melbourne
Who are the speech and language group at Murdoch Children’s Research Institute (MCRI)?
- Group in Melbourne Australia who focus on speech & language in children with genetic conditions
- Study speech & language profiles to improve diagnosis, prognosis & develop more targeted therapies
- Focus on clinically based speech pathology examinations to lead to direct clinical recommendations & treatments
- Also work with basic scientists on gene discovery, animal models of speech outcome & pharmacological trials
The languages supported in addition to English include:
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- Dutch
- German
- Spanish
- Italian
- French
- Portugese
To express interest in participating in the study, send an email to the Speech Tracker team.
View and download the flyer here.
LISTEN to Dr Angela Morgan talk about results from the first SETBP1 study and research.