AussieRett

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 Helen or Jenny at Aussie.Rett@telethonkids.org.au or phone 0419 956 946 / (08) 9489 7774.

 

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.

 

Please click on any or all of the links below to see the short clips on Vimeo.

 

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.

 

For more information contact Dr Helen Leonard on 0419 956 946 or Aussie.Rett@telethonkids.org.au