Results

The surveys were online May 4, 2020 to May 4, 2021. The website was seen in 83 countries, had over 14,000 page views and over 5.000 individual views. There were 48 short optional surveys, 1344 questions in total, and over half were checklist so in the end over 3,500 questions were asked.

The site continued to attract visitors while results were being analyzed. The site had now been seen in 88 countries, had 17.767 page views and 6.296 individual views.

The report analyzing the results and full copies of the results were posted online August 30, 2021. Since then in the first 3 weeks, researchers and support groups, chronic illness and pain associations have been informed . The website has now had 19,705 views, 7,221 individual views and the entire 622 page report has been downloaded 87 times. This means researchers are hearing patients and we pass the torch over to them.

1868 anonymous surveys were completed. The questions were designed based on clinical studies, patient biographies and patient questions about their own condition. Analysis was done through Survey Monkey which provided per cents of responses.  For each theme a summary was given of past research, areas of useful inquiry were summarized,  the per question results were presented and then a  preliminary analysis was done. Patients may find it interesting to see how much their own experience parallels that of others.

The results are presented in several formats:

a. There are two summary articles under 3,000 words each. One is about the motor aspects of dystonia and the other is about the nonmotor aspects.

b. Those who wish to study certain themes only can look at 45 individual files on the site. For specific topics an index is provided or it may be useful to just search for a given word and find all responses on that topic.

c. The full study will be put up on the website in pdf form for download.

For this project, patients stepped up to help answer some of the questions researchers have wondered about in clinical studies, to save clinics time and money and to provide a database for future avenues of research. No medical advice was given and there was no commercial involvement or promotion of any product or service.

Thank you to everyone who took part, to those who thought it a good idea and to those who helped spread the word of the project.

It may not be a pivotal moment in history but those of us with dystonia, this represents a real effort to do what we can to advance understanding of our condition.

I  am proud of everyone who took part. The next step is the hope that a few very smart people look closely at the data, see what we patients on our own cannot see and understand what we do not. So thank you to those researchers.

This is a personal website and will not be up indefinitely. If there is anything on the website you find useful, feel free to download it.

The Canadian Medical Association Journal has now published a patient’s blog about the project.