AussieRett & InterRett

The Australian and International Rett syndrome studies

Welcome to the website of Rett syndrome research being undertaken by the Telethon Institute for Child Health Research in Perth, Australia.

Rett syndrome is a rare neurological disorder mainly affecting females. We manage two databases that collect information from families and clinicians to better understand the course of Rett syndrome and effectiveness of treatments.

The Australian Rett Syndrome Study was established in 1993 and aims to collect information about all children and adults in Australia with Rett syndrome born since 1976.

The International Rett Syndrome Phenotype Database (InterRett) was established in 2002 and collects information about children and adults with Rett syndrome of any age from around the world.

Links for study participants

Join InterRett, the international Rett syndrome study funded by the International Rett Syndrome Foundation (IRSF).

If you have a login, click here to complete the InterRett Family Questionnaire.

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Click here to complete the AussieRett Family Questionnaire 2011.

View brochures about the AussieRett and InterRett projects.

Upcoming Family Conference in Brisbane!

The Australian Rett Syndrome Study with support from the Rett Syndrome Association of Australia and the Queensland Government is delighted to host the upcoming Family Conference on May 25 and 26 in Brisbane. All family members, care workers, educators and health professionals are welcome to attend. For further information inlcuding the a flyer and registration form please see the Family Conference link under Resources. We look forward to seeing you there!