Take part in the survey
We urge everyone with Orthostatic Tremor to take part in our Global Orthostatic Tremor Survey.
With international participation we hope for 500 submissions, with scope for twice as many, providing statistically significant results. These could have a tremendous impact on diagnosis, treatment and support services for OT, in guiding future research, and raising awareness amongst the medical profession.
- The questionnaire was developed by members of Orthostatic Tremor UK Support Group with clinical input from leading movement disorder specialists
- It builds on experience from similar surveys in 2019
- It aims to improve understanding of OT by gathering the experiences of people living with the condition around the world
- It is being promoted by orthostatic tremor support groups internationally with translations into their own languages
The core section of the survey takes around twenty minutes, with an optional second part taking another twenty. Because it is anonymous, the two sections must be completed in a single session. We recommend setting aside enough uninterrupted time and ideally doing it on a computer or tablet, although it is possible to do it on a smartphone.
Whether you were diagnosed recently or have lived with OT for many years, your experience is valuable. Every completed questionnaire adds to the evidence that can help researchers, clinicians and patient organisations better understand this rare condition.
Together, our individual experiences can become powerful evidence for improving the lives of everyone affected by Orthostatic Tremor.
Protecting privacy
All responses are anonymous and cannot be traced back to you. The survey explains how the information you provide will be used.
Governance arrangements to protect the privacy of those participating in the survey in compliance with both UK and EU GDPR are defined in these two documents:
Governance and Privacy Statement (PDF)
Data Management Plan (PDF)
If you have any questions, please contact us at survey@orthtrem.org.
See our Orthostatic Tremor Information booklet with advice and guidance for those diagnosed with OT and vital information for medical and other professionals providing services.