These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
Funded by the International Rett Syndrome Foundation, the international online database, InterRett, examines the clinical features and genetic characteristics of Rett syndrome. If you are a non-Australian family or care worker caring for a child or adult with Rett syndrome we invite you to participate in InterRett. Information is collected globally from both families and clinicians through online and paper based questionnaires that are available online in the languages listed above and paper based versions are available in French and Italian.
How to participate - Clinicians
We invite any clinicians who currently care for children or adults with Rett syndrome to participate. Data can be entered electronically through our website or by paper based questionnaires.
If you have your login details you can login here to compete the questionnaire.
If you have not yet registered to participate and would like to submit data on one or more of your patients please send us an email.
If you have multiple patients, you may like to email us to discuss other data submission methods.
Families - How do we collect and analyse your data?
We ask you to sign a consent form agreeing to take part in the InterRett project.
You then complete a questionnaire: you can use a paper version or you can do it online.
We ask your clinician to participate.
We ask a doctor who is familiar with the individual who has Rett syndrome to complete a Clinician Questionnaire. We provide them with a copy of your consent form.
The data are stored and cleaned.
The data are stored in a database. They are checked for errors and severity scales are calculated for each individual.
We analyse all the data we have received.
Data from the database are analysed by the Australian Rett syndrome team and collaborating researchers and clinicians from many other countries. The results are published in peer reviewed journals.
Some summary data are made available on our website through our Output database.
Participate in AussieRett
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.