Researchers at Murdoch Children's Research Institute (MCRI) in Melbourne, Australia are commencing a study into speech and language in Sanfilippo syndrome (MPS III).
The study involves two parts:
- Online surveys on the individual’s speech and language skills, and their health and medical history. Surveys are available in English, French, German, and Dutch.
- Some participants will be invited to a one-hour session with a qualified Speech Pathologist (in person or online via Zoom) in English.
To be eligible for the study, participants must have a genetically confirmed diagnosis of Sanfilippo (type A, B, C, or D) and be over 6 months of age. Participants can be verbal or non-verbal and at any stage of disease progression. The study is open to anyone worldwide and hopes to recruit 40 participants.
Hear more about the study in this short video from PhD Candidate Jen Wong.
To participate in the study, email geneticsofspeech@mcri.edu.au or record your Expression of Interest via https://redcap.link/Speechgenetics
PhD Candidate Jen Wong will conduct the study under the supervision of Professor Angela Morgan (MCRI & The University of Melbourne) and Laureate Professor Ingrid Scheffer AO (Austin Health & The University of Melbourne).
If you have any questions about the study, please email Jen at geneticsofspeech@mcri.edu.au
This project has been approved by the Royal Children’s Hospital Human Research Ethics Committee (RCH HREC Reference Number 37353) 26.07.2024 v1.
