As of November 14, 2020 (the half way point)
The website was launched May 4, 2020 with wordpress.com
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.
Supplemental series- One More Go
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
10,685 page views
3,676 individual views
It has been seen in 74 countries.
1326 surveys have been completed to date
The most common survey completed is survey 1.
The countries that have viewed the website at the half way point are:
Hong Kong. s. ar China
Trinidad & Tobago
United Arab Emirates
US Virgin Islands
The final results of the survey will be available after May 2021.
They will be available to researchers and interested patients on request, and a summary of the results will be posted on the website.
If you would like to be added to the list of those who wish to see results, please send a note to firstname.lastname@example.org
Thank you to all who have taken part, are taking part, or might just now decide to take part in this study.
It was created with several pages
History of dystonia
-Reason for surveys
-Links to full surveys
-Focus group and feedback
Resources for patients
Over the first 6 months these pages have often been updated
New pages were also added
How common is it?- incidence and prevalence
Inspiring people who have dystonia
Medical terms used
Not laughing, but coping
Public perception of dystonia in media
When it is easier
History of tricks
List of possible tricks
Technology and dystonia
Types of dystonia