10. Results – Website Views
The website at http://www.dystoniasurveys.org was set up in May 2020. It had several pages and over the course of the year new pages were added about prevalence, sensory tricks. Chronology page updates were added regularly also. The surveys were posted on a separate page with links to the individual surveys at the survey platform Survey Monkey.
The website at WordPress tabulated page views and numbers of individuals viewing the site over the year.
The website has been very active. By August 2023 it has been viewed in 109 countries, has had over 29,000 page views and as of November 2023, has had 14,624 individual views.
Website data during the survey period also gives an idea of the range of respondents to the one year survey. May 4, 2020 – May 4 2021
country 2020 2021 total
United States 6493 1467 7960
United Kingdom 1786 684 2470
Canada 1722 362 2084
Australia 474 166 640
France 178 107 285
India 172 45 217
New Zealand 177 16 193
Ireland 118 61 179
Sweden 122 50 172
Romania 138 15 153
China 112 19 131
Italy 99 20 119
Germany 94 21 115
Belgium 85 20 105
Finland 81 9 90
Netherlands 84 5 89
Czech Republic 16 65 81
South Africa 41 31 72
Switzerland 49 23 72
Mexico 30 36 66
Norway 47 15 62
Greece 45 3 48
Pakistan 30 17 47
Spain 26 14 40
Denmark 28 10 38
Austria 35 1 36
Malaysia 18 9 27
Cyprus 25 2 27
Israel 25 0 25
Hungary 23 0 23
Brazil 23 0 23
Portugal 12 9 21
Japan 16 3 19
Philippines 14 5 19
Poland 10 5 15
Turkey 14 0 14
Ukraine 0 14 14
Taiwan 13 0 13
Iceland 12 0 12
Kenya 11 0 11
Colombia 7 4 11
Slovenia 10 0 10
Russia 7 3 10
Peru 1 9 10
Nepal 0 9 9
Estonia 8 0 8
Thailand 4 4 8
Vietnam 5 3 8
Bangladesh 3 5 8
Argentina 5 3 8
Honduras 7 0 7
European Union 7 0 7
Hong Kong SAR China 4 3 7
Sint Maarten 6 0 6
Puerto Rico 0 6 6
Sri Lanka 0 6 6
Singapore 6 0 6
Chile 6 0 6
Sudan 5 0 5
Ukraine 5 0 5
South Korea 4 1 5
United Arab Emirates 4 0 4
Albania 1 3 4
Jamaica 4 0 4
Kiribati 4 0 4
US Virgin Islands 3 0 3
Venezuela 3 0 3
Serbia 3 0 3
Guernsey 3 0 3
Macau SAR China 0 3 3
Lebanon 0 3 3
Costa Rica 0 3 3
Croatia 3 0 3
Jersey 2 0 2
Trinidad Tobago 2 0 2
Egypt 1 1 2
Algeria 2 0 2
Indonesia 2 0 2
Brunei 1 0 1
Mongolia 1 0 1
Morocco 0 1 1
Slovenia 0 1 1
Uruguay 1 0 1
Latvia 1 0 1
Mauritius 1 0 1
Seychelles 1 0 1
POST SURVEY
The website has continued to attract visitors once the survey was completed.
Results of the survey were tabulated and then the site was promoted as a way to access those results.
In addition over the ensuing years, the website has been updated with new developments in research on the timeline, with contacts of new support groups, news of publications of books and production of movies on the topic. The list of sensory tricks has been updated as has the humor and coping section as patients around the world share ideas .
As of November 2023, the entire 622 page pdf of the survey has been downloaded 303 times. This means that globally the research community and patients are studying closely the results. There is not just hope. There is progress. We are headed forward.
Lived Experience With Dystonia 