Talking with the Pulmonary Fibrosis Foundation CEO, part 2

Second in a series. Read part 1 about the foundation’s work of the past 25 years.

During my interview with Scott Staszak, president and CEO of the Pulmonary Fibrosis Foundation (PFF), I was struck by his passion for the foundation’s work. I asked him to share his thoughts on what needs more attention in the pulmonary fibrosis community, and his response was almost immediate.

“First and foremost, although there’s been a significant amount of research and the arc of that research has really amplified in the past 25 years, there’s still a tremendous need for more research,” he said.

For instance, Staszak said, the lack of identified blood biomarkers “precludes people from having a simple blood or screening test” to predict whether they’re more likely to get idiopathic pulmonary fibrosis, which I have.

“Pulmonary fibrosis behaves differently in people, and we most likely need to develop multiple treatments,” he noted, explaining that selecting those treatments would happen more effectively if blood biomarkers pointed the way. “That’s the greatest barrier we face collectively,” he said.

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Vision for research

Staszak shared the foundation’s vision of becoming a better research partner and how it’s meeting that need through the two arms of the PFF registry. The first arm, the patient registry, leveraged the PFF’s Care Center Network, which collected clinical data from hospital visits, blood samples, and high-resolution computed tomography images from patients.

The patient registry’s initial phase was capped at 2,000 participants, he said, because of the cost of data collection, given the funds available at the time. It was initially planned to run for five years, but was extended to six after additional funding was secured.

“That patient registry has supported more than 80 studies and continues to receive new requests for research studies,” Staszak said.

The registry was especially significant for those studies because it provided the collected patient data, which eliminated the time and effort spent to recruit participants. When these researchers approached the PFF, the data was already available for their use at no cost. In addition, Staszak said, “we provided statistical analysis support from statisticians that we were paying because they had expertise in the data set.”

After 2018, when the registry hit its enrollment goal, patients continued to ask to join. Their desire to participate led the foundation to establish the second arm of the registry, known as the PFF Community Registry, in which people with pulmonary fibrosis or interstitial lung disease report their own information, thus reducing cost. Today, that registry has about 2,800 participants and includes information on not only patients, but also caregivers, patients’ blood relatives, and post-transplant patients.

The inclusion of these others in the registry may offer valuable insights. Caregiver observations provide data from a perspective different from the patient’s. The addition of the patients’ direct blood relatives may lead to a better understanding of familial pulmonary fibrosis. Finally, post-transplant patients can provide information on many aspects of their post-transplant journey.

The PFF wants the registry to contain more data than the patients could self-report, so a future iteration may combine the reporting elements of a patient registry with the expanded population of the community registry.

More robust data set

It was cost-prohibitive for the Care Center Network sites to provide the PFF with patient registry data. Imagine how much more robust the data set would be if the self-reported data, clinical data, laboratory results, and high-resolution imaging scans could all be included in the community registry.

Staszak said that having more data doesn’t necessarily make for a better registry; it’s about having more of the right data, right now, to meet researchers’ needs.

Still, there’s much work to be done.

“I can’t say today that we have the final design, and this is exactly how it’s going to work, but the vision is to do this,” Staszak said.

With the PFF working to improve the amount and type of data in the registry, the pulmonary fibrosis community needs to be willing to increase its participation. And with the registry’s expanded scale and participant eligibility, there’s no reason more people cannot become part of the solution.

I’m pleading with each member of this community to participate in the registry for the sake of future generations. It’s how we can 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.