I'm doing PhD research into how widely online support is used by UK-resident parents of people with Rett syndrome and how, when and why it is used. I became interested in this when I worked and volunteered with people with learning disabilities and their parents.

I'm interested in the views of all parents of people with Rett syndrome based in the UK - including parents who have never used or stopped using the Internet or online support - so please share this with anyone you know who might be interested.

I'm asking interested parents to complete a survey that took 10-15 minutes to complete in tests. It is available in paper and online versions. The online version is here: https://www.surveymonkey.com/s/RettSyndrome It is possible to pause it and return to it later – details are on the first page. Please contact me on the details below if you'd prefer a paper version. Please choose one person in your household (a parent of someone with Rett syndrome) to fill out the survey about their own experiences and views by 21st December 2012.

This research has received a favourable ethical opinion from the University of Surrey’s Ethics Committee. Data from the survey will be kept securely in accordance with the Data Protection Act (1998). Your identity will not be revealed to anyone else at any point. Only anonymised summaries of data will be shared as part of my PhD report and in related publications, presentations and teaching materials. You do not have to complete any questions you don’t wish to answer. However, please be aware that once you return the survey your data cannot then be withdrawn.

If you have any further questions, please feel free to contact me here or on j.belcher@surrey.ac.uk or 07583 641437.

Thank you very much for reading this message and apologies for cross-posting to anyone who has seen it before. I’m grateful to Christine for giving me permission to post this message here – thank you!