Similar Surveys

The idea of surveying patients is recent.

Because of the higher education and literacy rate of patients and easy access to technology, the medical profession is more often now asking patients, especially those with rare and incurable medical conditions, to tell more about their lived experience.

This input has huge potential to assist in the understanding of a condition and can enable researchers to see patterns that alone even patients cannot see. The ‘lived experience’ natural history type style is becoming an accepted added resource for medical study.

With appropriate protections for privacy and asking only voluntary cooperation as the patient wishes, doctors, research foundations and even patients are now embarking on the online questionnaire option.

Asking the patient for questionnaire input has been a useful tool used by researchers for decades.  The questions can be asked in person, in clinic or over the phone. However with online technology they can be collected with much lower staffing cost or imposition on researcher time and with computers, trends can be collected in aggregate.

Here is a summary of surveys I have of previous surveys for diseases other than dystonia, surveys specifically about dystonia, and notes about our surveys can advance medical study.


since the 1950s -general national health survey- in the UK

since the 1980s re caregiver burden – the Zarit Burden Interview

1996  Experience of Caregiving Inventory ECI: developed by Szmukoler was a self reported measure with 66 items for those caring for a relative with serious mental illness


For Parkinson’s Disease- an ongoing patient study with optional genetic analysis component. It has had 49,753 participants so far.

For rheumatology

for cancer and chronic disease in Ontario

for perceptions during infectious disease outbreaks

For chronic pain -a  16 country study in 2006

For caregivers of those with severe mental illness: a 2015 study in 22 countries, reaching 1111 family caregivers, done in 12 languages and asking over 60 questions about experiences, burden, stigma, supports, satisfaction and needs.

for users of mental health services – a 2011 study of stigma and shame among patients

for covid 19 – an online current study recruiting 50,000 people who tested positive to the virus to collect anonymized data about their experience of the condition and recovery


Patient surveys for dystonia are more recent. They tend to be of two types.

a. surveys about living with dystonia

2002: study of quality of life and depression for those with cervical dystonia and dystonia affecting the eyes – 220 patients from 8 clinics in Austria


2005: Beth Israel Dystonia Screen (BIDS) – a computer assisted telephone interview to screen for cervical and cranial dystonia based on data from 193 individuals in 16 families


2010: Natural history and biospecimen repository – an ongoing study

The Dystonia Coalition recruits about 400 patients per year for a longitudinal study of several types of dystonia. It requires clinic visits and lab tests and issues a questionnaire about psychological effects and impact on daily life


2014: a study  in Japan of the effect of dystonia on employment


2015: International Survey of Patients with cervical dystonia

1071 patients in 38 countries were asked questions in an online survey in 2012,  about whether there was pain, impact on daily life, sleep, goals of treatment, types of and  effect of treatment.  It asked 42 questions and time to complete it was estimated at about 15 minutes.


2017: a study of possible dystonia among musicians in Japan.

Of 1300 people asked at 41 conservatories, 66 responded. The survey had 28 questions asking about experience with the condition, coping mechanisms and treatments.


b. surveys about a specific type of treatment, sometimes sponsored by a drug company

2012: Satisfaction with botulinum toxin treatment – a study of 36 patients in 4 countries


2017: a study of effectiveness of botulinum toxin – a Canadian study  by the Dystonia Medical Research Foundation (Canada)

613 people responded, from all across Canada. The survey was supported by Merz Pharma Canada. The survey asked age, gender, type of dystonia, use of botulinum toxin, and had a few questions about sleep, mood, paid work, and pain.


2019 (date unclear): Leger was conducting  a survey of cervical dystonia and those with upper limb spasticity. The survey was recruiting participants online and addressed specifically the use of botulinum toxin. The survey took 20 minutes to fill out and people who participated received payment.



2020: a patient-driven survey with 28 separate optional questionnaires in the first six months and 14 additional surveys in the second, totalling several thousand optional questions. 

The online surveys, anonymous and volunteer, ask about symptoms, progression of symptoms, effect on daily life, mood, pain, interactions with the medical community, types of treatments and  their effects and side effects, moods and coping mechanisms, sensory tricks, theories about possible causes .

The survey series by the half way point has been seen in 74 countries  and over 1276 surveys have been completed,. The series runs May 2020 to May 2021.