Clinical trials: What matters to you?


By taking part in clinical trials, patients play a vital role in researching new treatments for pulmonary hypertension – and it’s important their voices are heard when it comes to designing them.

The PHA UK has an ongoing partnership with researchers from the University of Cambridge and Royal Papworth Hospital to ensure clinical trials consider the needs of patients and their loved ones, and in Spring 2022, we teamed up to conduct a collaborative survey aimed at understanding what matters to this community.

With implications for all future research, the survey was conducted with the specific aim of shaping the design of a new trial called StratosPHere.

This trial will investigate whether two specific drugs – phenylbutyrate and hydroxychloroquine – are beneficial to patients with pulmonary hypertension. These drugs are currently being used to treat other conditions.

There are lots of new and innovative ways the team hope to carry out this research, and this survey asked for opinions on these methods and much more.

The findings will now directly inform the protocol and delivery of this trial, as well as influencing the design of other PH trials in the future.

Read the findings below:

“The COVID-19 pandemic has changed the way that healthcare is delivered.  It is also changing the way that research, including clinical trials, is designed and carried out.  There are still many aspects that are just done ‘the way we’ve always done them’.  We are keen to re-think this both from the medical and scientific perspective, but also by understanding what is important to you, the patient.  We want to make clinical trials as straightforward for you to take part in as possible and measure aspects of your health that most reflect your day-to-day life, without compromising the quality of the results.”

Dr Joseph Newman, Clinical Research Fellow, University of Cambridge and Royal Papworth Hospital