InterRett is currently the largest congruent dataset of phenotypic data in the world!

Funded by the International Rett Syndrome Foundation (IRSF)

1902 Unique cases
As at 1st June 2009

Case breakdown
Family questionnaire only 503
Clinician questionnaire only 157
Both Family and Clinician questionnaires 300
Spanish cohort 354
French cohort 231
Australian cohort 357

663 have one of the following common mutations: R106W, R133C, R168X, R255X, R270X, R294X, R306C, T158M.

Family participation graph

Our mission

To collect and bring together data from many different and varied information sources to enhance our knowledge and build a clearer picture of Rett syndrome

Where do we find information on individuals with Rett syndrome?

Information is sourced globally from:

• Rett syndrome clinical centres
• Clinician files
• Living experience of families and carers

How do we bring it together?

• By providing easy access to standardised questionnaires to both professionals and families
• Translating questionnaires into different languages
• By providing custom databases and support to clinicians with multiple cases of Rett syndrome
• Assisting with the conversion of hand-written notes into digital records
• Contributing to the development of standardised protocols

How are these data used?

• Searchable online database
• Collaborative research with clinicians and researchers in Australia, China, France, Israel, Japan, Spain, UK and the USA

Who has access to these data?

De-identified data is available to any researchers who meet the requirements of the Data Access Guidelines