Because OT is such a rare condition, all surveys play an important role in gathering vital information to help those researching into the condition.
Orthostatic Tremor UK Support Group is running a Global Orthostatic Tremor Survey
The following information was posted to the Facebook Orthostatic Tremor Support Network group on 28 June 2026 by Dave Treanor.
You are invited to take part in our Global Orthostatic Tremor Survey which will update worldwide statistics on people living with OT.
It is organised by people with OT, for people with OT. Your experience can help improve understanding of OT, guide future research and strengthen the case for better care worldwide.
Please choose a quiet time to complete it by clicking the link below. It takes about 20 minutes, with an optional second section that takes around another 20 minutes. To preserve your anonymity it has to be completed in one session, which is why we ask you to choose a quiet time to do it, preferably on a computer or tablet rather than a smartphone.
Survey link: https://www.surveymonkey.com/r/WR8567Z
The President of our Orthostatic Tremor UK Support Group is Dr Amit Batla, a leading Movement Disorder Specialist at UCL in London. He told our Annual Conference “Individually we struggle to get the attention of neurologists, but collectively we have a powerful voice”. He suggested we organise this global survey to capture the experience of those with Orthostatic Tremor, and advised on the questions of most interest to neurologists.
It is designed to meet the highest ethical standards required of medical patient studies. All responses will be anonymous and cannot be traced back to you. The purpose and how data from each part will be used is explained in the survey itself.
Every completed survey strengthens the evidence we can present to neurologists and researchers. Even if your symptoms are mild or you were only diagnosed recently, your experience matters.
Every person with OT has a unique story. Together those stories can become evidence that improves understanding, treatment and support for everyone living with Orthostatic Tremor.
Please direct any questions to me via survey@orthtrem.org. Thanks for your cooperation