Share your PF journey through a patient registry

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2017, I soon learned the cause and cure were mysteries yet to be solved.

I know firsthand how difficult it can be to solve a mystery. Difficult, but seldom impossible. I worked my first career as a special agent for the Air Force Office of Special Investigations until I retired after 22 years.

Another kind of investigator works as a researcher to understand pulmonary fibrosis (PF). In five types of PF — drug-induced, radiation-related, environmental, autoimmune, and occupational — the cause can be identified. Genetics can also be involved. A care team might use a variety of clues to identify a patient’s PF type.

When a cause cannot be identified, the PF is termed idiopathic and the diagnosis one of exclusion. My diagnosis had three classic IPF components: clubbed fingers, a persistent cough, and signs from a high-resolution CT scan.

Though we IPF patients share the same diagnosis, the specifics of our journeys are all important clues in solving the mystery of our condition. We need to share those experiences with researchers.

Recommended Reading

June 9, 2023 News by Lindsey Shapiro, PhD

Ofev prolongs IPF patient survival in real-world Czech registry study

You can help

One way to share is through the PFF Community Registry, one of the primary research programs of the Pulmonary Fibrosis Foundation (PFF). It’s open to all patients living with PF or interstitial lung disease (ILD); lung transplant recipients who had PF or ILD; caregivers; and biological family members of those with PF or ILD (even if the patients have passed away).

The registry’s power lies in its number of participants. As that increases, so do the data available to researchers.

Caregivers are also able to contribute their experience with their patient. I learned that the perspective of my wife and caregiver, Susan, was different from mine. She could see me struggle in ways that I might not sense and can record those observations in the registry.

Joining the registry is a relatively simple process that takes about an hour. After you’ve completed the initial registration and submitted the initial survey, you’ll receive occasional emails to let you know you have further documents to complete in the registry.

Every good column should answer the question “Why?” Why should I join the PFF Community Registry?

Shortly after my diagnosis, when someone asked why I was involved in advocacy and awareness events, my response was that I do (insert activity here) so that a future generation doesn’t have to know PF. In fact, the first time I used that phrase was at a PFF Walk, where my sign read, “I walk so a future generation doesn’t have to know PF.” I’ve used it many times since then.

I want to encourage you to join the registry by sharing your experience with the disease. Your data and experience are your voice to researchers. The PFF Community Registry is recruiting, and they need you. In fact, the PF community needs you desperately. Your response might not be for you or me, but for those generations to come.

I joined as a way 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.