As of November 14, 2020 (the half way point)
The website was launched May 4, 2020 with wordpress.com
THE SURVEYS
The surveys were launched May 4, 2020 with surveymonkey.com
They will ask for input until May 2021.
At the half way point,with new information, early feedback and suggestions
a shorter series of supplementary surveys was established- the One More Go series
in November 2020.
This second series will also be up until May 2021
There are in total 42 optional, voluntary, anonymous surveys They cover a wide range of topics and when compiled may provide researchers with data from a very large number of areas. In total, though no one does all the surveys because not all apply to all people, there are a total of 1344 questions. Since many of the questions are multiple choice or checklist, this means that the public with dystonia is being asked about, and amazingly many are willing to tell about several thousand aspects of this condition.
Each survey takes on average 4 minutes and 24 seconds to fill out, some more, some less..
By the mid point, November 2020
WEBSITE
10,685 page views
3,676 individual views
It has been seen in 74 countries.
Lived Experience With Dystonia 