TAKE PART IN THE POWER FOR POTS UK SURVEY HERE!
The purpose of the study is to investigate the healthcare experiences of adults in the UK that either suspect or have a confirmed diagnosis of Postural Tachycardia Syndrome (PoTS). The aims are to explore experiences of symptoms, treatment, management, access to healthcare, the costs of managing the condition and demographics and experiences of COVID-19 where relevant.
The research project is being led by Dr Gemma Pearce working with PoTS UK charity and a team of researchers. You have been selected to take part in this questionnaire because you meet the eligibility criteria: you are an adult living in the UK and have a diagnosis or suspect you have PoTS.
Your participation in the survey is entirely voluntary, and you can opt out at any stage during the survey by closing and exiting the browser. If you are happy to take part, please answer the questions in the Power for PoTS UK Survey. Your answers will help us to understand these areas in more detail and will aim for summarised and anonymised results to be published. The survey should take approximately 30-40 minutes to complete.
Your answers will be treated confidentially and the information you provide will be kept anonymous in any research outputs or publications. Your data will be held securely by Coventry University and PoTS UK on a password protected and encrypted electronic folder. After completing the survey, responses will remain anonymous and so you will be unable to withdraw your data after completion.
The project was granted ethical approval by Coventry University’s Research Ethics Committee (project reference: P130452).
For further information, or if you have any queries, please contact the project research assistant Jake Williams-Becker (email: ad7288@coventry.ac.uk). If you have any concerns that cannot be resolved through the research team, please contact ethics.hls@coventry.ac.uk.
Thank you for taking the time to participate in this survey. Your help is very much appreciated.
We aim to publish the results of the survey helping to support change for people with PoTS in the future.
Project Team
hEDStogether lead
Gemma is the lead for this world-leading hEDS together research theme, she is involved in all of the featured research projects and has hEDS/HSD herself.
BHF PhD nurse fellow
Helen is a British Heart Foundation PhD nursing fellow and is currently involved in developing a supported self-management programme for people with POTS.
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