Usually when clinical trials are summarized, researchers conclude that more research should be done. Over the course of the study they learned things that they now feel should be asked as follow up.
In the survey series here, the timeline is long. The surveys were set up in May 2020 and last for one year.
Over the course of this year, feedback, new information and suggested questions have come in. Thank you so much to those who by the half way point have completed over 1295 surveys. The website has had over 10,000 page views from 74 countries.
I am grateful for the time so many have put in and for your optimism that this will make a difference. Thank you to those with particular medical challenges just filling in the surveys and who still do them. Thank you to those with specific forms of dystonia, in the hand or the eyes or vocal cords who have waded through the surveys and found the ones that apply to them.
Please keep spreading the word and filling out the surveys. As we do this there are a few questions that could have been asked, a few areas it would be useful to delve into more deeply.
We have the unique chance at the half way point, six months into the survey, to create the survey series’ own follow-up.
So this is the supplement to the surveys. We are giving it ‘one more go’. Now people can fill out the first set and the second as they wish.
The first series had 22 short surveys, some with A and B sections.(so 28 surveys)
The follow up has 14 but relax – there are fewer questions. Each one should take only 5- 10 minutes to fill out.
As before, feel free to wade in, do any you wish, skip any questions or surveys you wish and do them at your own convenience.
The surveys also are still, of course, anonymous.
All of the results from the surveys will be assembled in May 2021 and then the project has ended. The anonymous results will be collected in aggregate and available to researchers and to interested patients.
Here then is the new series, one more go. As mentioned, each one should take only 5- 10 minutes to fill out.
Survey 23 – One more go – Symptoms (24 questions)
Survey 24 – One more go – Symptom Progression (7 questions)
Survey 25 – One more go – Daily Activities (22 questions)
Survey 26 – One more go – Sensory Tricks (12 questions)
Survey 27 – One more go – Eyes (7 questions)
Survey 28 – One more go- Face, Mouth, Jaw (18 questions)
Survey 29 – One more go- Vocal Cords (19 questions)
Survey 30 – One more go – Neck (15 questions)
Survey 31 – One more go – Shoulder, Arm, Hand, Fingers (15 questions)
Survey 32 – One more go – Leg, Feet (16 questions)
Survey 33 – One more go – Trunk (8 questions)
Survey 34 – One more go – Coping (18 questions)
Survey 35 – One more go – Medical Treatments Tried (14 questions)
Survey 36 – One more go – Effects and Side Effects of Treatments (10 questions)
Survey 37 – One more go- Effects and Side Effects of Pills (11 questions)
Survey 38 – One more go- Alternative Medicine (10 questions)
Survey 39 – One more go – Moods and Dystonia (11 questions)
Survey 40 – One more go – Describing Dystonia (6 questions)
Survey 41 – One more go – Possible Causes (7 questions)
Survey 42 – One more go – Outlook (2 questions)