Getting involved in research: How taking part in clinical trials can change lives

10
December 2021

Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?

When Andrew was diagnosed with idiopathic pulmonary fibrosis, he was given a two-year life expectancy. In 2010, the opportunity arose for him to take part in a clinical trial testing whether a new drug could help slow the progression of the disease. That drug turned out to be Nintedanib, one of only two antifibrotic medications now available to be prescribed to eligible patients with idiopathic pulmonary fibrosis.

This fantastic outcome was the result of years of work and millions of pounds of investment. But the question remained, could this drug also help people with other forms of pulmonary fibrosis? Scientists, clinicians and patients began investing time in answering this question. And the evidence shows that it does.

In October this year, NICE agreed that Nintedanib could be prescribed to all patients with progressive fibrosing ILD.

Andrew, who was in the original clinical trial, said

I feel everyone who is diagnosed with pulmonary fibrosis should be offered Nintedanib. It has prolonged my life and quality of life

APF are proud to have been part of the campaign to make this change happen and we’re so grateful to everyone who was part of this process. However, we know this news has not come soon enough for many. There is much more to be done. Slowing the progression of the disease is not enough, we want to stop it in its tracks. And this is why we directly fund research. Join us in our research appeal to provide Hope for All.