Southeastern Rett Syndrome Alliance

Dear Families,
Thank you for participating in our InterRett Work Practices Pilot study.
We are now approaching our third and final stage of the pilot! Please read below for an update on how the pilot study progress.
What’s been happening so far
In August last year we invited 173 families who were current members of our InterRett Phenotype Database and who had completed the Family Questionnaire, to take part in the new pilot study. Since then we have had 138 families participating. Currently, 136 mums and dads (from 103 families) have completed Part 2 and are now ready for part 3. This pilot study will also be the topic of two presentations to be held in health related scientific forums in 2008.
If you haven’t done parts 1 and 2
If you haven’t done part 1 & 2 yet, its not too late! However, we are getting ready to move on to Part 3 of the study, and would like it if everyone who is interested to please complete part 1 & 2 in the next few weeks. Send a quick reply to this email if you would like your login details sent to you again.
If you who have finished Parts 1 and 2
Thank you to everyone who has completed Part 1 and 2 We will be sending you instructions on how to complete the final part of the study soon. Also, if you have not returned your consent form, please read below.
About Part 3
Our occupational exposure experts have read through your job history and selected jobs that are significant in relation to this pilot. Most people will have between 1 and 3 jobs selected. The questions are nearly all multiple choice, with the occasional short answer, and will take you about 5 minutes for each job.
Consent Forms
If you haven’t yet returned your consent form, please print it out (a copy is attached to this email), sign and return by fax, post or scan and send by email. Details of address, email and fax number are below.
Thanks for your continuing participation and support!
Kind regards,
The InterRett Team

Clinical Associate Professor Helen Leonard – Director
Professor Nick de Klerk – Co-Director
Professor Sue Fyfe – Co-Director
Alison Anderson – Project Coordinator
Dr Philippa Carter – Research Officer
Meg McHugh – Research Assistant
International Rett Syndrome Study
Telethon Institute for Child Health Research
PO Box 855, West Perth WA
AUSTRALIA, 6872
Phone: +61 8 9489 7790 or +61 419956946
Fax:     61 8 94897700
Email: rett@ichr.uwa.edu.au