New national pulmonary hypertension database gets greenlight

16 August 2023

Funding has been awarded to Royal Brompton and Harefield hospitals to create a national registry for patients with chronic lung disease and pulmonary hypertension.

Led by Professor Stephen John Wort and Dr Laura Price, pulmonary hypertension consultants, the registry will allow the collection of data on this specific group of patients for which there is currently limited information.

Creating a registry to help understand why patients develop pulmonary hypertension and following their clinical course will enable further research and ultimately improve care.  

What is pulmonary hypertension (PH)?

PH is high blood pressure in the blood vessels that supply the lungs (pulmonary arteries).

This causes the walls of the pulmonary arteries to become thick and stiff, so they aren’t able to expand as well to allow blood through. The reduced blood flow makes it harder for the right side of the heart to pump blood.

With the right side of the heart working harder, it gradually becomes weaker which can lead to heart failure.

Although there are several very rare forms of pulmonary hypertension, it is more common in people who already have a heart or lung condition.

PH is categorised into 5 groups depending on the cause.

Group 3 PH is the focus of this registry and is linked to chronic lung diseases or lack of oxygen which causes pulmonary arteries to narrow. This forces the blood into a smaller space, which increases blood pressure, causing pulmonary hypertension.

This group of patients have a very poor outlook and there are very limited treatment options.

National PH network

Royal Brompton and Harefield hospitals is one of seven national centres in the UK which have been designated to provide pulmonary hypertension services for adults. The centres offer investigation and treatment for PH and are responsible for prescribing complex therapies such as pulmonary vasodilators (drugs that open up the blood vessels in the lungs and help the right side of the heart work better).

The UK centres work closely together, sharing expertise and combined data registries which has led to many important research publications.

However, there is currently no UK registry for Group 3 PH.

Dr Wort explained why the creation of a registry for this group is so important. He said:

“Creating such a registry is really important, so we can understand why patients with chronic lung diseases develop pulmonary hypertension. Unfortunately, we know that when these patients do develop pulmonary hypertension, they do not do very well and currently we have very limited treatment options.

“When we know which patients develop pulmonary hypertension and why, we can devise new trials and test out drugs used in other forms of pulmonary hypertension as well as develop novel drugs.

“This funding has come at a really good time as there is an international move to make more progress in this devastating condition”.

The funding was awarded by Ferrer pharmaceuticals and will fund a research fellow to coordinate the inception of the registry.

To find out more about our research, please contact us.

Read more of our research stories or sign up to our research newsletter.