Participate in InterRett / MECP2 Duplication Research
How Can You Participate?
The InterRett and MDBase are important databases for the collection of health-related information on Rett syndrome and MECP2 duplication syndrome respectively. You can participate in our research from anywhere around the world. If you are interested in being involved, please register your contact details at the registration page.
Clinician Participation
If you are a clinician or healthcare professional currently caring for children or adults with either Rett syndrome or MECP2 duplication syndrome, we would like to invite you to share our website with your patient' parents or complete the questionnaire yourself. You can enter information through our website or by paper. Please send us an email at Helen.Leonard@telethonkids.org.au to discuss options.
Contact Us
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761
Families - How do we collect and analyse your data?
- We ask you to sign a consent form agreeing to take part in the InterRett project.
- You then complete a questionnaire: you can use a paper version or you can do it online.
- 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.
- 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.
- 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.
- Some summary data are made available on our website through our Searchable Online Database.