This survey project has completed collection of data as of May 4, 2021. Thank you to all who took part. Thank you also to the many researchers who encouraged this project and all who have asked to see results.
There were 48 separate, optional, anonymous surveys totaling 1,344 questions, making it the most comprehensive survey of dystonia ever done.
1,868 surveys have been completed.
The aggregated results have been assembled through Survey Monkey, which has proven to be a very helpful scientific resource. The results will now be studied in great detail, looking for patterns that may help researchers understand our condition better.
Thank you again to everyone who has had faith in this project, who has understood the pure science goals of it, the high standards of anonymity, and the complete lack of commercial interest. Thank you to the people who took the time to fill out the questions, knowing that there is not necessarily going to be personal benefit for them, but who are doing this to advance science.
The summary results of the surveys will be posted on this page when complete.