The Australian Rett Syndrome Study
AussieRett, as the Australian Rett syndrome study has come to be known, operates from the Telethon Institute for Child Health Research in Perth, Western Australia. Launched by Dr Helen Leonard in 1993 the project was initiated to collect data on individuals with Rett syndrome that could be used to carry out epidemiological studies. Since its inception AussieRett has collected data on 280 cases, developed strong collaborative links with other researchers around the world and published 42 papers on Rett syndrome in peer-reviewed journals.
The Australian Rett syndrome study in collaboration with the Australian Paediatric Surveillance Unit recently held the first Rett syndrome workshop for parents. The workshop was attended by over 70 parents from all corners of Australia and was a great success.
InterRett – IRSA Phenotype Database
InterRett is the first-ever project collecting data on a worldwide basis about Rett syndrome. This international project aims to:
- Provide a large sample of cases for analysis
- Increase the clinical understanding of Rett syndrome
- Encourage collaboration among researchers around the world.
- Provide an innovative and efficient mechanism to share knowledge and provide clinical support.
InterRett has collected data on almost 600 cases from 28 different countries! Both families and clinicians participate in this exciting project by completing an online questionnaire.
Explore the data!
The output database is an interactive tool that allows you to search Rett syndrome data (from the InterRett and Australian Rett projects) and produce graphs. There are 36 different clinical items that you can explore which include presence of scoliosis, epilepsy and problems in infancy and common MECP2 mutations just to name a few.
We encourage you to explore the output database and give us your feedback. If you would like more information on InterRett or AussieRett just drop us an email.