Would you participate in clinical trials for IPF?

we need as many clinical trials as possible if we are ever to get a cure for this PF and all the others items attached to it best wishes to you all john uk

I am presently in week four of a year long clinical trial in Ontario ! I made the decision after being unable to take OFEV due to its increasing horrible side effects on me .
I am so very happy that even if I do have a placebo, I am helping make a difference with this devastating lung disease! Thank you for posting this Sam !

It is alot of work just getting to the testing hospital and giving it your entire attention! However I now have more than one respiratory doctor ! And an inspirational group checking in on me !

Just knowing that perhaps I will have helped turn the clock back on IPF gives me hope !

I have only assumed that any drugs I might be on would be prohibited for the trial. OFEV is my primary concern as I would not give it up for a clinical trial where I might be given a placebo for a year or whatever the trial period is.

Yes I would participate in clinical trials.I believe it will help find the cause and can be treated differently rather than meds with all these bad side effects I've been diagnosed since 2019 and now it is 2025.i actually seem to be doing better .I try a lot of natural remedies and eat certain foods.

If it gave me access to promising treatments I can’t get otherwise, yes. But I’d want to see who’s running it, what the risks are, and if there's any long-term data. Some trials are just pharma fishing for approval, others are legit steps forward.

I have tried to participate but was rejected in one because of having stage 0 melanoma removed 4 years ago and rejected from 2 more because my FVC was too low to qualify.

I was diagnosed with IPF almost three years ago. I have been on OFEV practically ever since. Since I am 78 and not really eligible for a transplant, I would be happy to participate in clinical trials, provided I can join in at-home studies. I do not travel long distances well, but I am mobile, not on oxygen, and capable of reporting my results daily if necessary. I would be particularly interested in studies looking into oral spray versions of OFEV or similar drugs, which would at least alleviate the side effects of OFEV.

I was a caretaker for my longtime girlfriend who got IPF, then a lung transplant, and finally cancer that killed her four years ago. It was a terrible experience that has left me with a lot of sad interest in what causes IPF. Yet I feel I can't offer any input that would be meaningful. However, I want to thank you for sending out this inquiry. I think people currently dealing with IPF will respond and it will provide good, valuable information to researchers......BTW I like reading your occasional comments.

Would love to join a clinical trial . Was just diagnosed with IPF. I have a cough, but they don't know how long I have had IPF. I have not started Meds yet. Passeed the PF test with no problem, so going to do another in early Nov to see if any decline.
If you know of any trials in Tucson Az I would love to know.

1. My PF is idiopathic but it is not IPF. Would I even be qualified?
2. Transportation?
3. Is it mRNA?
4. Cost?
I read that everyone with pulmonary fibrosis has need of a specific transport agent in order to receive needed zinc. Does the test for cause of IPF also include what may be missing for that lung to be healthy?

I am an 81 year old male in reasonably good health. The bombshell came out of the blue in May of 2024. “What, I said! Incurable? No known cause?, incurable?, Only a 3-5 year window to look forward to? No wonder it is called Idiopathic”. I am taking Ofev and while I don’t enjoy the side effects, my latest May2025 evaluation showed only minor changes in my lung capacity. I get out of breath more frequently and its duration seems longer and requires more oxygen.
I would be happy to participate in a studyr , hopefully in the Asheville, NC area.
Thank you for posting.

Andy Partridge
Asheville, NC

I would definitely participate in a clinical trial. We know that this is a fatal disease so anything that may help find a cure or keep the disease from advancing seems to be a positive goal. If you happen to be on the arm of a study that gives you the actual drug they are studying, you could be that much closer to the goal if it proves to be successful.

While working as a nurse our hospital participated in a clinical trial for strokes. I was very impressed at how the trial was conducted and felt all patients were treated fairly.

Sam,

Like you, for the same reasons, I have participated in 2 double-blind clinical trials after being diagnosed with IPF in March 2021 & told I likely had 2 to 5 years to live. My brother died from IPF in 2019 after about 30 months from diagnosis, though telomere testing on me determined it was not familial IPF.

I did not want to take either of the available anti-fibrotic medications available & my pulmonologist was okay with this unless I started declining. My brother was on OFEV & had such horrible side effects he stopped using. Once I started declining in Summer of 2024 I started on Esbriet October 1, 2024.

The first I participated in was a Phase III Clinical trial through Ohio State University with an intravenous infusion of Pamrevlumab (Fibrogen) every 3 weeks for 48 weeks. After the 48 weeks was completed in October 2022 I continued participation with the Open label portion of the study beginning in November 2022 & remained stable with lung PFT tests & CT Scans. My last infusion was June 2023 as the study was canceled by Fibrogen in July 2023.

In November 2023 I started another Phase III Clinical Trial at the Cleveland Clinic with Treprostinil (also called Tyvaso) via a nebulizer 4x/day taking 12 breaths each time. I completed the 52 week double-blind study in November 2024 & moved to the open label portion taking 15 breaths 4x/day via the nebulizer. I started declining after my May 2024 as indicated by PFT tests in August & again in November during 12-week study visits.

Once started the open label the study pulmonologist wanted to have me try for lung transplant as was still in good condition for a 67-year old man other that IPF. After screening tests / procedures in December 2024 & February 2025 I was determined to be sick enough with IPF but healthy enough to have a likelihood of surviving the bilateral lung transplant. I was listed by the National organization on February 21 with a 75+ rating. On February 28 was called in for a potential donor match that turned out to not be suitable. I was again called in for a potential match on March 7 & had the transplant on March 8, 2025 at 68-years old, ending my participation in the Clinical trials.

I hope that helps give some indication of what you are asking as feedback. Enjoy reading your articles, Sam, and following others on Forum.

I was diagnosed with IPF 5 years ago. Have been on Esbriet for all 5 years. I have participated in 2 trails. One they discontinued about 14 months after I started because of poor results. I have been on a second one for 15 months. So I want to mention my concerns when I thought about joining one was, can I continue taking my Esbriet. Answer was YES. I want to let others know I felt I could help and still continue with my prescribed drugs. Check these trails out. I feel hopeful.

Hi Sam,
I live in South America and worked for a clinical trials company for almost 20 years. My wife also worked there and currently owns a CRO (contract research organization, a company that conducts trials for pharmaceutical companies). Over the years, I learned that clinical trials are the best option for patients with incurable deseases. Why? Because new medications are tested against the best available options. Of course, also often tested against placebos.
In her research for available studies, my wife found opportunities in NY, we joined a phase 2 trial and we moved there for the first 3 months, to ensure protection from potential collateral effects.. There were none. My IPF didn't improve, it actually progressed marginally in the following 8 months, where I am now. I go back to NY every 3 months and undergo a few tests. I am treated by some of the best pulmonologists in the world at no cost to me, in one of the best hospitals, except for the travel and lodging costs.
My study will finish in October and there is a 50% chance that I got the placebo, or may be not and the drug is not that good. But I think I'm doing the best I can to get cured, rather than staying at home waiting for IPF to take me away. I confess I'm not really thinking I'm helping future patients. Would do it all over again even if does not work and, as soon as I'm eligible for another trial, I´ll be the first in line. Best regards, Daniel.

I would be interested in being a trial participant, level 2 or 3, of possible therapeutics. I’m taking perfenidone and would not want to stop doing that. The logistics of getting to and from a trial base are important as well, of course. Lastly, is there a list of trials needing participants somewhere?

I have already asked my consultant if I can go on any test there is. I was told that my name could possibly be put forward for a lung transplant in 2021, aged 61. However then covid came. I am now 65 and wonder if I might still be considered as pf is beginning to restrict what I can do a bit more!

When my father was diagnosed with pulmonary fibrosis in 1999 he gathered the entire family together and told us the bad news, including that there was no cure nor treatment and that he would almost certainly be dead within 5 years. He did, in fact, die 5 years later and he did so with loved ones around who had had the time to prepare for their grief. One additional gift he gave us was information that there was a suspicion among doctors that there was a genetic component to the disease and family members should keep that in the back of our minds if we ever had symptoms. Fast forward 19 years and my identical twin sister was diagnosed with IPF. When she told me, I got tested and in 2022 was also diagnosed. By that time there were two drugs available that slowed progression of pulmonary fibrosis, OFEV and Esbriet. Knowing my father's experience of no hope of ever getting better, and the fact that both of the available treatment options required clinical trials. I made a commitment to participating in trials that could potentially stop the disease or at least lead to earlier diagnosis. I was strongly encouraged to participate by my doctors at Brigham and Women's hospital in Boston. I was partially driven by self interest--I was committed to doing everything I could to remain healthy and symptom free for as long as possible, but a second best result would be to to further research so that patients of the future would have better options. I was fully aware that I had a one in three chance of getting the placebo, not the real drug. I also knew that I might have to stop the trial due to unmanageable side effects or burden of study visits. Another factor against participating was the number of required study visits and the day long trek to Boston for each visit. Still, I knew the Principal Investigator of the trial, Dr. Hunninghake was highly regarded in the IPF field, and had decades of research experience. I also heard that he chooses to participate only in what he considers promising trials--in my case a trial of BI1015550 which is funded by the drug company Boehringer Ingelheim (they are the company that produces OFEV). For the past 18 months, I have been in the trial. After 12 months my lung function had remained much the same--a good result I thought. Then I found out that I had actually been on the placebo. After several months on the real drug, now called nerandomilast, my lung function results have actually improved and are close to my 2017 results.The drug has now been submitted for FDA approval. I owe my future life to BWI and Dr. Hunninghake! My experience with clinical trials is certainly quite unusual, but if the trial is a Phase 3, having proven itself with a smaller population and if it's in an area that has a fighting chance to increase treatment options without unpalatable side effects, I hope more people will get involved. We need more options to treat pulmonary fibrosis and even if the end results don't work for you, they may work for fellow patients and vice versa!

I am in a late stage of this disease.
Emphysema also.

I have thought about clinical trials because, like you, I want to help find a cure for this disease. I hesitate for 2 reasons: I am doing well on OFEV and I don’t want to stop it or get a placebo, and i don’t find brief but very informative explanations of the various clinical trials.

I’m not at all against participating in drug trials; I just don’t live close enough to where the studies are.
As I understand it, for most of them, it requires the patient to live close enough for frequent follow up visits to test and record findings at various points along the length of the trial.

If this isn’t correct, I’d certainly be a willing participant if it helped stamp out this hideous disease.

I have participated in at least seven clinical trials. My experience is that they are extraordinarily well run and careful with the participants. I want a cure for this miserable disease and whateverI can do to further that I will.

In addition, when you participate in clinical trials you are also privy to the best medical care in scrutiny. I was diagnosed in 2017, and I'm still alive and kicking.

I was diagnosed w IPF in Oct 2024, I found it very early and the Ofev seems to be keeping it in check. So far my lung function tests are normal. I've told every Dr I meet that I want in clinical trials, finished one in December and starting another Friday. My reasoning is the same as yours; I don't want anyone to say I didn't try to help, and rather go down swinging than just roll over. Also my mother in law for cancer and now I for IPF will get extra attention from experts and who wouldn't want that? I'm curious about your experience with the new lungs. So far that's the only option to keep going but I've got hope that some sort of gene therapy will be developed soon. BTW I hope no IPF folks voted to have research defunded this is llfe and death more important than politics or money. I'm adding this as the 2nd trial I entered has been cut short when the funding was abruptly cut off a couple months ago. I am the last person into the trial, there were supposed to be dozens more so at best the data won't be as certain.

Is there any clinical trials in the Knoxville, TN area and also is there any knowledge of donating your body/lungs to a facility for the purpose of study on this disease specifically? I have about 10-15 lbs of weight to lose to be seen at Vanderbilt Hospital in Nashville, TN. 3 hours from my home- and once the weight is off then I of course have to pass all the other tests to qualify for DLT. August 2024, Vanderbilt gave me 1.5 years to live with my current condition. I've had IPF for 11 years and had an exacerbation in Dec. 2022 and been going downhill since, 5 L, 02 24/7 and now the coughing is escalating. With the price of the surgery, the living conditions (having to live 30 minutes from your hospital) it's basically impossible for me to do a transplant, I can't afford the surgery but even more so I can't afford to live in Nashville for 3 months and neither can my family. So right now I'm just living the best I can- but would love to donate my body to researching this awful disease so maybe there can be help in the future- My fibrosis is inherited- my grandmother died from it, my uncle, my aunt-- but I am the youngest to be hit - I was 43 at first diagnosis and currently 54.
I would do the clinical trials if they are close to my home, the last I checked on were Atlanta and that's too far for me.
Thank you,
Samona

I am currently participating in a clinical research study at the University of California,San Francisco. I am taking does of ecgc, an extract from green tea. The study is simple (for me). I take the pills every day and have pretty much bi weekly blood tests. The hope is that the green tea extract will stop the progress of the disease, and perhaps reverse it. I am happy to participate, and plan to continue taking the extract after the 17 week phase 2 study ends. I may be taking a placebo for now, but will take the real thing later, just in case. Most, if not all participant in phase 1 are still taking the extract as it is available over the counter. There are many benefits from this green tea extract other than the hoped for IPF treatment, so it is a good idea all around. I would encourage all people to participate in any study that comes along. I am sure the studies are well supervised and would not pose a threat.

Diagnosed with IPF a few months after a gallbladder explosion that nuked my pancreas (cause diabetes 2). During at home recovery, nurses found I had severe dyspnea and pulmonology visits (CT scan, spirometry, 6 min walk test led to Dx.

It's already hard to do simple things like take my rolling garbage/recycling bins to the curb weekly!
My straitened finances mean that transplant is never an option, (I'm 74 and was disabled by stroke at at 50. The amount of effort it would take me to make regular visits to a probably not-convenient clinical trial site? Not happening. I'm saving my remaining energy for pleasant road trips with my partner, and working with him to ensure end of life prep is handled.