Preliminary Survey Results

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.

            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

WEBSITE

10,685 page views

3,676 individual views

It has been seen in 74 countries.

SURVEYS


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:

Algeria

Argentina

Australia

Austria

Belgium

Brazil

Brunei
Cambodia

Canada
Chile

China
Colombia
Croatia
Czech Republic

Denmark

Egypt
Estonia

European Union
Finland

France
Germany
Greece

Guernsey
Honduras

Hong Kong. s. ar China

Hungary
Iceland

India

Indonesia

Ireland
Israel

Italy

Jamaica

Japan

Jersey

Kenya

Kiribati

Latvia

Malaysia

Mexico

Netherlands
New Zealand

Norway

Pakistan
Peru
Philippines

Poland

Portugal

Romania
Russia

Serbia

Seychelles
Singapore

Slovenia

Smt. Maarten

South Africa

South Korea

Spain
Sudan

Sweden

Switzerland
Taiwan

Thailand

Trinidad & Tobago
Turkey

Ukraine
United Arab Emirates

United Kingdom
United States
Uruguay
US Virgin Islands

Venezuela
Vietnam

FINAL RESULTS

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 bevgsmith@gmail.com

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

            Surveys

                        -Disclaimer

                        -Reason for surveys

                        -Sample questions

                        -Links to full surveys

                        -Focus group and feedback

            Bibliography

            Resources for patients

Over the first 6 months these pages have often been updated

New pages were also added

            Current research

            Downloadable poster

            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

            Sensory Tricks

                        When it is easier

                        History of tricks

                        List of possible tricks  

            Similar surveys

            Technology and dystonia

            Types of dystonia