It is still at the data entry stage.

Kristina Bory, the organiser at University College, London, has asked me to pass on their thanks to those who participated.

I am interested in researching spasmodic dysphonia. I would like to send out a survey or an email questionnaire. How do I get a list of everyone's email addresses? Any assistance that you can offer would be greatly appreciated. Thank you.

Sincerely,

The survey referred to in the first post in this thread was developed by statisticians, and health professionals with an interest in SD, at the University of London.

It was sent out to approximately 1000 SD patients (many of whom are posters to and readers of this bulletin board). This e-mail list is a sub-group of the wider membership maintained by the On-Line Dystonia Support Group. The members joined the group on the basis that their addresses would not be released to others - so this would not be a possible source of email addresses in your case, sorry.

I'd suggest you contact the NSDA to discuss your proposal. The email address is nsda@dystonia-foundation.org. If your survey is approved by the NSDA then I'm sure we could use our email list to send it out to our members, on a bcc (blind carbon copy) or undisclosed recipients basis.

Of course you are free to email SD patients individually if you can obtain their addresses or invite them to contact you.

Best wishes