What we do with the information families provide

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

	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.

4. 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.

5. 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.

6. Some summary data are made available on our website through our Output database