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Research Priorities - Share your views!

PoTS UK are working alongside PoTS specialists to influence national guidelines.

The team are working on a Consensus Statement. This is a formal agreement developed by experts to guide and support healthcare professionals who see people with PoTS. The agreement is based on what available research there is in PoTS.

We need your help! Part of the Consensus Statement recommends what sort of PoTS research is needed in the UK. Research helps everyone understand and support people with PoTS better.

All areas of PoTS research are important. In this survey we want to find out what you feel the most important areas are to research first. Recommending research priorities helps researchers decide what is needed and helps research funders decide on what needs funding.

We would love to hear what you think the research priorities should be for PoTS.
1.I think the following topics should be made a priority for further research in PoTS? Please select which 4 topics you thinks should be the highest priority. We have provided more details below this question about each option to help you choose.(Required.)
Here are some further details about each topic to help you select your research priorities in Q1:

CAUSES OF PoTS AND THEIR IMPACT ON THE BODY
  • Understanding what goes wrong in the body to cause PoTS (pathophysiology).
  • Identifying what triggers PoTS to start to worsen, such as pregnancy, surgery or psychological trauma.
  • Understanding any relationship between PoTS and the immune system (called anti-bodies).
  • Investigating whether vaccines play any role in triggering or affecting PoTS.
  • Genetics of PoTS (ie how PoTS runs in families).
LIFESTYLE CHANGES
Identifying the most helpful lifestyle changes (like diet, exercise, sleep, compression) and how best to support people in making them.

MEDICINES
Which medications help people with PoTS, and what side effects they may cause.

IV FLUIDS
Exploring whether intravenous (IV) fluids help manage PoTS symptoms and when they might be appropriate.

LINKS WITH OTHER CONDITIONS
Understanding how PoTS connects with other conditions.

IMPROVING NHS SERVICES
How we can improve NHS healthcare and services and support people with PoTS better. For example, having an NHS programme of support or a dedicated health professional to support people between appointments.

IMPACT ON LIFE AND SOCIETY
The impact of PoTS on society, the healthcare system and the person with PoTS (socioeconomic impact).

LONG-TERM OUTLOOK
Understanding the long-term effects of PoTS and how people fare as they age.

OTHER
Any other important areas you think need research.
2.In terms of further research in to the causes of PoTS and their impact on the body, which area do you think is most important? Please select your top two.(Required.)
3.For lifestyle changes, which of the following do you feel require the most research. Please select your top 3.(Required.)
4.For research into associated medical conditions, which of the following do you feel require the most research. Please select your top 3.(Required.)
5.Is there anything else you would like to suggest?
6.If you are happy for us to contact you to discuss your feedback, please leave your email address below.
Thank you for taking the time to complete this survey. The best way to stay up to date is to become a member of PoTS UK. It is free to join. Visit: https://www.potsuk.org/become_a_member

Data Privacy Statement
What we do with the information that we gather from survey responses.
In obtaining your cooperation to participate in the survey, we undertake not to mislead you in any way about the nature of the research we are conducting, the way in which the data is collected and the use that will be made of the survey results.
All of the information that you provide will be treated as confidential and will only be used for research purposes. Your comments will not be identified as belonging to you, instead they will be combined with those gathered from other survey participants, and will be analysed as part of a group. We do not use any of the information you provide for direct marketing or other non-research activities.
If we ask you for personal information that enables you to be identified - e.g. your name and e-mail address we will clearly state why we are asking for it and for your permission to use it for that purpose. For example, it might be to inform you of future surveys, to see if you would be happy to share your story or to inform you of future events.
Your participation is voluntary. You are entitled to ask that part, or all, of the record of your involvement in the survey be deleted or destroyed. Please contact enquiries@potsuk.org if this is the case or you have any questions regarding our data privacy.