InterRett

InterRett

 

Click here to Join InterRett

 

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

 

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Funded by the International Rett Syndrome Foundation, the international online database, InterRett, examines the clinical features and genetic characteristics of Rett syndrome. If you are a non-Australian family or care worker caring for a child or adult with Rett syndrome we invite you to participate in InterRett. Information is collected globally from both families and clinicians through online and paper based questionnaires that are available online in the languages listed above and paper based versions are available in French and Italian.

 

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 your login details you can login here to compete the questionnaire.  

 

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 to email us to discuss other data submission methods.

 

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 Output database.
Interesting Fact

The T158M mutation is the most commonly identified in the database.