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.
July 2021 update: The survey results have now been collected and statistically analyzed. There are 31 survey theme areas. Each file includes the background of the questions, full per-question response statistics, a preliminary analysis trying to see patterns, and suggestions for further research.
The next challenge is to put this data in the hands of researchers. It is hoped there will be an avenue to publish the results for a wide audience of researchers, since this is envisioned as a global database.
A shorter summary of the results focusing on areas of particular interest to patients will be posted on this website when complete.