By working together, we will be able to have better therapies and a cure for PF

Someone out there holds the key piece of evidence needed to advance research toward a better therapy, treatment, or cure for interstitial lung diseases, including pulmonary fibrosis (PF). Since my diagnosis of idiopathic pulmonary fibrosis (IPF) nearly 10 years ago, I have met some of the smartest people imaginable who are working on these very issues.

I had the opportunity last week to speak to researchers from across the healthcare provider Inova, in Virginia, as part of its Clinical Research Day. I was diagnosed at Inova and had a bilateral lung transplant there in July 2021.

When I was diagnosed, only two antifibrotic drugs had been approved by the U.S. Food and Drug Administration: Esbriet (pirfenidone) and Ofev (nintedanib). Jascayd (nerandomilast) was approved for IPF in October 2025, and then two months later for progressive pulmonary fibrosis.

At the clinic appointment after my diagnosis, I was enrolled in the original Pulmonary Fibrosis Foundation (PFF) Patient Registry, which granted researchers access to all of my clinical data, and have been involved in a number of opportunities that researchers categorize under four distinct methods: observational, biological, investigational new drugs (INDs), and technology.

Observational research is simply watching an activity to create a record. For me, that involved different aspects of the six-minute walk test. Biological research primarily involved collecting blood samples or other bodily fluids or waste. INDs involve research into the potential benefits and risks of a new medication. An IND trial I took part in was terminated after no discernible difference was observed between the placebo and drug arms. It’s worth noting that in an IND trial, both the placebo and drug arms are equally important. The technology trial I took part in involved a portable spirometer connected to a smartphone, with the results sent to my care team.

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I want you to take part in PF research

What do all these research opportunities have in common? They all rely on human participation and, in most cases, require patients. Challenges recruiting patients can result in needing more time to conduct a trial and can delay the approval of new drugs.

A question I was asked when I spoke with researchers last week was what surprises me about research. My answer was about the difficulty in recruiting people to participate.

Today, I would like to ask a question of my readers. If you are a patient and not participating in research, I’d like to know why. If you are participating, I’d also like to know why.

I don’t want to make anybody uncomfortable. If you are not participating, I am interested in learning about any barriers you face that prevent it. I won’t judge you for your reasons, but I will likely try to change your mind or try to help you find a way to participate.

I want to send readers’ responses to the people I have met in the pharmaceutical industry and research communities to help them better understand what patients think about trials, especially when they are reluctant to participate.

We are making progress, as demonstrated by increased enrollment in the PFF Community Registry, an online version of the previous registry. On May 18, the PFF announced that 3,000 people had enrolled in it. I asked a foundation representative about the significance of that number.

“We reached this important milestone because people impacted by pulmonary fibrosis and interstitial lung disease are committed to advancing research for these debilitating conditions. They are true partners in this work,” PFF’s chief scientific officer, Jessica Shore, told me in an email. “The more people who take part, the stronger the data becomes and the faster we can move toward better therapies and treatments.”

Participating in research will not benefit me directly, so I suppose my own desire to participate can be summed up as altruism. I would prefer a future generation not to have to know IPF or any other interstitial lung disease. Only by working together will we achieve better therapies and a cure. Together we are stronger and can make every breath count.

If you feel comfortable sharing, please tell me in the comments about barriers to participating in research, or share why you are involved in research.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.