Would you participate in clinical trials for IPF?

Being diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF) and learning that the disease is chronic, progressive, and incurable was a lot for one day. Of course, I wanted a cure or better therapies to be available immediately. But what I came to learn during my journey is that this pursuit is ongoing and takes many different forms — including clinical trials.

Research may be funded by advocacy organizations like the Pulmonary Fibrosis Foundation or by government agencies like the Congressionally Directed Medical Research Programs. In my experience, this type of research often focuses on identifying causes of IPF and finding ways to slow or halt the progression of fibrosis.

Pharmaceutical companies may also invest in research, though they’re typically focused on developing investigational new drugs (INDs).

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Let’s talk clinical trial participation

Last week, I was part of a conversation about clinical trials. I don’t want to influence your responses to the questions I will leave you with today, so I’ll only share that the group involved patients (both pre- and post-lung transplant), caregivers, support group leaders, and medical professionals.

One of my other roles here at Pulmonary Fibrosis News is forums moderator. A few months ago, I started a discussion titled “Let’s talk about clinical trials,” where I asked two questions: “What do you want to know about clinical trials? What holds you back from participating in an IND trial?”

The responses were mixed, so I wanted to bring the questions to my readers. I also want to share my perspective on clinical trials.

During one of my earliest clinic visits following my diagnosis, I asked about participating in research. I left that day with three informed consent documents, which are products of Institutional Review Boards (IRBs). One responsibility of an IRB is to ensure the safety of human participants in a clinical trial. Over the next four-plus years, before receiving a lung transplant in July 2021, I would review many of these documents.

If my care team thought I was a good fit for research or a clinical trial, I was a willing participant. I ended up consenting to the collection of my blood and other bodily outputs for IPF research, and I also participated in trials of INDs.

Why? My why, even today, is that I want future generations to know of IPF only as a chronic, progressive disease that was cured. Following my bilateral lung transplant, I am no longer eligible to participate in clinical trials for IPF. Many of you are, though.

One of the ongoing challenges in clinical trials is identifying enough qualified participants — which is the reason for this column. I ask that you consider the following questions and respond in the comments.

• What do you want to know about clinical trials that would make you feel more comfortable participating in them?
• If you have participated in a clinical trial, will you share a little about your experience?
• If you haven’t participated in a trial, will you share any reservations or concerns you may have?

The rigorous standards imposed by IRBs always made me feel comfortable participating in trials. If you have questions about my experience, you are welcome to ask. Identifying a pool of patients willing to join a clinical trial is something we can do together to make every breath count.

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.