How Can You Participate?
AussieRett is the Australian Rett syndrome research study. We collect information on Australian individuals with Rett syndrome from both families and clinicians. If you would like to learn more please feel free to contact us.
Functional Ability Video Study
This study is designed to better understand your daughter's functional skills during everyday life by showing us how she moves, eats and communicates.
Families in the Australian Rett Syndrome Study will receive an information sheet about the study, a consent form, a functional ability video checklist and information on how to take the video and return the footage to us. If you would like copies of any of this information either emailed or posted to you please contact us.
To help you when you are filming your daughter, one of the mothers in the study has generously given us permission to make her daughter's videos available for other families in the study to watch. For the family's privacy these videos have been password protected, please contact us at the email address or phone numbers above to receive the password.
- Mobility and Posture Tasks
- Communication
- Hand Function Tasks
- Eating and Drinking Tasks
- Breathing Patterns
- Grooming
- Sleeping Posture
- Other Favourite Activities
AussieRett Family Questionnaire
Doctors can report a patient with confirmed or suspected Rett syndrome either directly to the study or through the Australian Paediatric Surveillance Unit.
Families, care workers and doctors can participate in our Rett syndrome research by completing a questionnaire and assisting with the collection of medical reports.
Families and carers are invited to contribute information every 2 to 3 years in relation to changes in the health or function of the individual with Rett syndrome for whom they care.