PoTS Guidelines and Research
7th February 2017
We are gathering the final submissions for a large, multi-specialty, best-practise document for PoTS and associated conditions that we hope to publish and/or make available online this year. This is a PoTS UK initiative, which is novel for being UK-specific and exploring ideas that may not yet have been proven through vigorous research. We want that research, but in the meantime we want everyone to have access to the best care as soon as possible, so we want to circulate the approaches and treatments that PoTS experts have found successful in their clinics. Ideally having this document published might make it easiest for interested medics to find it. But getting this far has taken a very long time already so we want to make it available as soon as possible. If you think you have trouble getting your healthcare team talking to each other - imagine trying to get more than 50 consultants and practitioners on the same page!! Joking aside we are so grateful to them all for donating their time, and especially Dr Gall who is taking the lead in it all.
We really believe we will soon have something of great value and useful to all people with PoTS and their physicians. We may have a fundraising drive later in the year to help us make hard copies widely available.
At PoTS UK we are committed to doing all we can to get much needed research into PoTS. We have lead some work as you may be aware, all available on our website, and bring respected international researchers together to share and grow their research agenda. We have some studies underway and in the pipeline. But we want to do more……
We have been working for a while to try to build a national PoTS registry of patients with a diagnosis who are willing to participate in research and/or have their medical records shared. Ideally we would like this to involve bio banking (i.e including blood samples to look at genetic and immunity aspects for example) - but this is a very expensive project as you can imagine. We have been working with some great research teams to understand what is involved and apply for funding. Please cross all your fingers and toes that our bid is accepted (many of you will have done more than that already and signed our petition!). One way or another we are committed to forming a platform for high quality research and encourage interest in the area.
We are always interested to hear from you what you feel should be our research priorities so please do let us know. And we hope we have debunked the idea that only the USA does research. They make super contributions and we have helped fund some of them - but we need, and are working for, much needed UK projects.