Get involved with the PHA UK

Is it possible to diagnose PH earlier? – your thoughts

Can you help?

CLICK HERE TO TAKE THE SURVEY – You don’t need to give your name

A research study by one of the UK’s specialist centres is aiming to discover whether looking at existing clinical data derived from people living with PH might help earlier diagnosis for people in the future.

The aim is to be able to paint a clear picture of the ‘natural history’ of breathlessness where pulmonary hypertension is suspected, allowing for earlier diagnosis and better outcomes.

This research would involve accessing personal health records to obtain clinical data from tests you may have had at outpatient appointments; for example, echocardiograms, lung function, blood tests and walk tests.

However, obtaining individual written consent from each person presents a number of problems – including the fact that, unfortunately, some of those people may have passed away.

At the PHA UK we would like to help the research team understand whether you, as somebody living with PH, would be agreeable for your data to be accessed without your written consent – bearing in mind that the aim of this would be for earlier diagnosis for people in the future.

We have put together a very short survey to help us understand whether people living with PH would be happy to have their health records accessed without consent for this purpose.

Please take two minutes to share your thoughts and play your part in informing important research into pulmonary hypertension.

CLICK HERE TO TAKE THE SURVEY – You don’t need to give your name

Please complete the survey before Monday 16th December

Listen to Iain Armstrong, Chair of the PHA UK, explain more about what we’d like to find out:

Last medically reviewed: December, 2019 • Due for review: December, 2022