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. 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: firstname.lastname@example.org).
The survey has now closed. Thank you for everyone who has taken the time to participate in this research. We are now analysing the data and aim to publish the results of the survey helping to support change for people with PoTS in the future.
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.
Follow us for the latest on hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders.