Enrollment of Pulmonary Fibrosis Foundation Patient Registry is Complete

Enrollment of Pulmonary Fibrosis Foundation Patient Registry is Complete

The Pulmonary Fibrosis Foundation (PFF) has completed the enrollment of PF patients in its PFF Patient Registry, with the admission of the 2,002nd patient.

Launched in 2016, the PFF Patient Registry was created to compile large quantities of data collected from anonymous PF patients, and use it to help researchers obtain more insight about the disease and find potential new treatments.

“The PFF Patient Registry is a major resource designed to accelerate progress in pulmonary fibrosis research and in understanding the causes of PF,” Kevin R. Flaherty, MD, steering committee chair of the PFF Patient Registry and PFF Care Center Network, said in a press release.

“Since the registry launched, we’ve seen a tremendous response from the research community and are eager to assist them in answering key questions about the disease,” Flaherty said.

Patients in the registry were enrolled through the sites comprising the PFF Care Center Network. By collecting data from the patients’ medical records it was possible to create a database with patients’ ages, gender, symptoms, diagnoses, test results (including high resolution CT scans and blood samples), medications, and clinical outcomes.

Researchers interested in using the data available in the registry are invited to submit proposals covering different areas of PF research, including causes, diagnoses, and treatments. The PFF opens applications three times a year.

In 2017, PFF announced the first research projects using data from the PFF Patient Registry in the Pulmonary Fibrosis Foundation Summit.

“The registry is an example of a critical open-access resource containing phenotypic clinical data and biospecimens that can be leveraged by investigators to enhance recruitment and retention of patients for clinical trials, as well as support ancillary or independent mechanistic studies to better understand the etiology of pulmonary fibrosis,” said James P. Kiley, MD, director of the division of lung diseases at the National Heart, Lung, and Blood Institute.

One interesting feature of the registry is the possibility of enrolling patients who are interested in participating in clinical trials.

Join the PF forums: an online community for patients and caregivers living with Pulmonary Fibrosis.

“We are proud to support the PFF Patient Registry to help advance science and have a positive impact on the pulmonary fibrosis community,” said Ben Kramer, MD, vice president for U.S. medical affairs at Genentech, one of the registry’s founding partners.

“This significant enrollment milestone underscores patients’ dedication to supporting research as scientists strive to better understand pulmonary fibrosis,” Kramer added.

The PFF Patient Registry reached half of the registry enrollment target with its 1,000th patient in May 2017.

Over the next few years the PFF, with additional funding, plans to enroll more patients and include additional sources of data for the registry.

The development of the PFF Patient Registry was possible not only through Genentech’s funding, but also through the support of foundations, corporations, and individuals who have been affected by PF and who believe the registry is crucial to ultimately improve the lives of patients.

For more information about the PFF Patient Registry, you may watch this video.


  1. Harry Penders says:

    I was recently diagnosed with Idiopathic Pulmonary Fibrosis at the Kaiser Medical Center in Portland, Oregon by a group of terrific Pulmonary Care Team. The Bx. of my right lung was the clincher. I am to be started on a rather expensive Rx. called ‘Pirfenidone’ since I’m still in the ‘early stages’ of IPF according to my ‘PFT’s’ in June. Though there is a general worsening over the last 2 years.

    Do you have any links to payment for this new RX? I understand that Medicare will pay for some of it, and I also have VA Healthcare. However, the reason I chose to go beyond the VA as a basic opinion of their specialists that who felt I had ‘COPD.’Which I don’t have and was ruled out by Kaiser Pulmonary Specialists. All of them. The VA said I would just need to have a yearly visit of 25 minutes, yearly PFT’s with no changes in RX’s; and out to the pasture I was sent.

    There’s a tendency according to reps I met from the ‘Mayo’ was for the VA to lump us into a category of COPD for this is where is where the smokers, alcoholics and some PTSD patients go. Neither of which I don’t have. I smoked for several years, lightly with use of less than a pack a week. No other critical diseases or alcoholism.

    My question is ‘How do I get the VA to pay for these meds or some of the costs not covered by Medicare? Would you have links?

    Also, discussed with me was the possibility of a lung transplant which the VA has to make some kind of effort with this major cost. I’m not even sure if the VA has any idea of my search for a second opinion. It should be noted that I am doing exactly what the VA is trying to do, and that is to move vets toward private health care. The Kaiser has all my recent records from the Portland VA.

    I don’t know how to connect with the VA or who to even who to see concerning my full and advanced treatment of ‘IPF’ and not COPD. Obviously, I wasn’t happy with my pulmonary care which was basically nothing but inhalers for COPD. My pulmonary MD’s (dept) at Kaiser Portland has just been wonderful. They respect me and treat me as a person and more respect that I ever received at the VA. My so-called VA specialists sent me out to where no progress lit the runway. To where mortality was the ruling. Even my Kaiser/Mayo team remains disgusted by the lack of pulmonary care at VA. I would have only known this if I didn’t have 30+ years as a working critical care RN. I knew what was in store for me and I said no, along with good support systems of family, friends and my new profession of photography. My photos are on my Facebook page. Harry Penders/ Gresham, Oregon.

    Thank you,
    Harry Penders

    • Michael Lamkin says:

      Harry, I had the same experience with the VA regarding being lumped in as just another COPD patient with emphysema. I was also given a couple of inhalers (Spiriva and Symbicort). I then contracted Valley Fever which took almost 18 months to finally go “dormant” (there is no cure). I was then diagnosed as having had Valley Fever with underlying IPF. That was a little over 4 months ago and was the first time I’d ever heard of IPF. The VA is now paying for the Esbriet and I have a small co-pay of between $8-34 a month (not sure yet how much because I haven’t received my first bill yet as I’ve only been in the medication for a little over a month). I’ve been using the VA for two and a half years and in all fairness my private pulmonary doctor, who I dropped a year and a half ago, also never mentioned IPF, only COPD. I’m pretty sure if you went back to the VA with your current medical records they would have no choice but to provide the medication. Regarding a lung transplant I was told by the VA that the age cut off was 68 (I’m 72) but I could still apply for a lung transplant if I chose to do so. I’m still considering that option but don’t have a lot of confidence that even if I apply that my request would go anywhere.
      It was kind of strange the way the VA informed me that I had the disease. I was asked if I had a living will and if I had all my affairs in order. I was then off handily informed that I had IPF and that there was no cure and it was a fatal disease. I was informed about the two medications currently available for treating IPF but got the impression they felt the side affects far outweighed the benefits (I’m now pretty sure they just didn’t want me to use the medications because of the cost). I did wait a month and a half before starting Esbriet to allow for my own diligent research.
      I wish you the best of luck Harry and please do keep us informed of your progress with the VA.

  2. Harry Penders says:

    Please, some of the opinions expressed here esp. with the VA are mine as based on my connection with a second opinion/s. I tried to erase the more of the VA emotional parts of this comment but I couldn’t get in to tighten up comment.

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