Skip to content

How Can You Participate?

Through InterRett we collect information on individuals with Rett syndrome on a global level. If you are a participant you can complete your questionnaire here.

If you are not already a participant and would like to join this exciting project please register your interest here.

If you already have your login details you can login here to complete the questionnaire.


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 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.

To find out any more information about how you can be involved, don't hesitate to contact us. 

Phone: 0419 956 946 | (08) 6319 1761

Families - How do we collect and analyse your data?


  1. We ask you to sign a consent form agreeing to take part in the InterRett project.
  2. You then complete a questionnaire: you can use a paper version or you can do it online.
  3. We ask your clinician to participate.
  4. 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.
  5. The data are stored and cleaned.
  6. The data are stored in a database. They are checked for errors and severity scales are calculated for each individual.
  7. We analyse all the data we have received.
  8. 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.  
  9. Some summary data are made available on our website through our Searchable Online Database.
Telethon Kids Institute