PFF Registry Report: 2024

PFF Registry 2024 Annual Report

RESEARCH

COMMUNITY

IMPACT

DEAR FRIENDS,

Have you ever wished you could end pulmonary fibrosis (PF) and other interstitial lung diseases (ILDs) forever? Everything we do at the PFF is directed toward that goal: achieving a world without PF/ILD. The PFF’s priorities are clear: faster and more accurate diagnoses, better treatments and, ultimately, a cure.

The good news is that you can help by joining the PFF Community Registry and completing surveys every six months. As a patient, a biological family member, a caregiver, or a lung transplant recipient who had PF or ILD, your participation in the PFF Community Registry gives scientists an actionable understanding of these devastating diseases.

The PFF Community Registry is the most efficient tool we have to reach our goals because it gives researchers the data they need to make new discoveries that can improve life for people with PF/ILD and their families.

Ever since my earliest days as an ICU nurse in a major academic medical center, I’ve seen how important the involvement of loved ones is to patients with serious medical conditions. And my work leading the PFF Care Center Network to improve life for people with PF/ILD has shown me that every family’s story can help researchers in some way.

That’s why we designed the PFF Community Registry to give everyone affected

by PF or ILD a voice and an easy way to contribute to vital research. If you haven’t yet enrolled, please join us today.

If you have already enrolled, please complete your follow-up survey promptly every six months when you receive it. And let’s spread the word to everyone affected by ILDs! I’d like to close by recognizing Scott Staszak, the PFF’s recently promoted president and CEO. We in the PF community have already benefitted greatly from Scott’s drive and vision. Over the past decade, he has worked tirelessly to make the PFF what it is today. Read more about Scott’s impact on page 15.

Sincerely,

JESSICA SHORE, PHD, RN Senior Vice President Clinical Affairs and Quality

Make the Choice, Use Your Voice In our community, we know too well the devastation that PF and ILD can cause.

Currently, more than 250,000 Americans live with PF or ILD. These diseases include lung scarring and inflammation that translate into difficult symptoms like cough and shortness of breath. PF and ILD frequently worsen over time and may result in disability or death.

That’s why the Pulmonary Fibrosis Foundation is bringing together a community of people affected

by PF and other ILDs. This community includes patients, caregivers, family members, lung transplant recipients, health care professionals, researchers, industry partners, and others.

Now, members of our community can make the choice to use their voice by joining the PFF Community Registry today.

The PFF Community Registry is a unique nationwide research program and a crucial step forward for the PF/ILD community. The Registry welcomes everyone affected by these diseases to

sign up and contribute data to scientific research.

For the first time, people who join the Registry can directly tell researchers about how living with PF and ILD affects their lives.

The Community Registry does not have an enrollment cap and participants can live and get care anywhere in the United States. This Registry is the first and largest of its kind including patients, family members and caregivers focusing on PF and ILD. Sign up for the PFF Community Registry today at pffregistry.org.

We need new and better therapies, and the only way to get them is by doing more research. Our community can help us by entering their data twice per year to help us understand the impact of ILD across the country.

Kevin R. Flaherty, MD, MS, Chair of the PFF Registry Steering Committee 3

What is the PFF Community Registry?

Help Change the Future of PF and ILD

The PFF’s research program lets researchers explore what treatment strategies work best for patients. The Community Registry has the potential to help find new ways to prevent, diagnose, treat, and potentially cure pulmonary fibrosis.

The more people who participate in the PFF Community Registry, the more everyone benefits. And those benefits will only increase over time, as more people complete follow-up surveys. The more data in the Registry, the more questions researchers can answer.

The PFF Community Registry is an observational research study that collects survey responses from people over time. It captures real-world data to help researchers learn about disease burden, care patterns, and the impact of disease.

Collecting data over time means that researchers can identify trends. Registries do not prescribe what should be done or require additional medications, visits or tests.

A registry tracks information about the health status of patients and the care they receive.

A registry can also collect information from caregivers, family members, and others who contribute to the care and outcomes of patients.

The true value of the PFF Community Registry is that it lets researchers look at changes over time among the same group of participants. Staying current by completing follow-up surveys every six months is the best thing you can do to help the Registry succeed.

We need your continued participation!

PFF shares research results with PFF Registry members

Who can join the Community Registry?

You can join the Community Registry if you:

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Are a patient diagnosed with PF or ILD Are a lung transplant recipient who has had PF or ILD

18+ Are 18+ a caregiver or biological family member (parent, child, full/half sibling) of a patient with PF or ILD, including those who have passed away

18+ The Registry DOES: • Collect survey responses from people over time, including patients, caregivers, family members, and people who have had ILD-related lung transplants.

• Compile observational research findings.

1

Sign up.

Live in the United States and

AND

18+

18+

Are 18 or older

Researchers use Registry data to conduct studies

Close the circle.

Join the Registry today.

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Be part of something special and sign up today at pffregistry.org!

The Registry DOES NOT: • Prescribe what care a patient should receive.

• Require additional medications, visits, or tests.

Complete study-specific surveys as needed.

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Complete baseline survey.

Complete follow-up survey

• Compare treatments or outcomes head-to-head.

• Collect data “snapshots” that can reveal long-term patterns when people answer the same questions at regular intervals.

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How the Community Registry Can Help in the Fight Against PF

The Inside Scoop on the PFF Help Center If you’ve ever called or emailed the PFF with a question about PFF or the PFF Registry, you’ve probably communicated with PFF Help Center manager Jen Simokaitis, who lost her father to IPF. “Last year we fielded 3,800 calls and 1,800 emails and the questions are incredibly wide ranging,” she says.

The PFF Community Registry aims to make positive contributions in several key areas that affect the PF community. These include: Research - Data from the Registry can be used as the basis of studies that will ultimately be published in peer-reviewed medical journals. This is how scientific and clinical advances become widely accepted over time.

Clinical Trials – It often takes years to recruit enough patients to run a clinical trial. The Registry will speed up that process by connecting interested participants with open clinical trials to shorten recruiting timelines.

Clinical Practice - What we learn from Registry participants can be used to create PFF Position Statements. These documents help guide clinicians with the goal of improving health care delivery methods for all patients with PF and ILD. Education – One of the PFF’s most important goals is to always be the trusted resource for reliable information about PF and ILD. Over time, we will use what we learn from the Community Registry to create new educational resources for patients and families.

Advocacy – The PFF maintains a robust advocacy program to educate public officials about issues that affect people with PF and their families.

We will use what we learn from the Community Registry to inform our advocacy efforts to improve the lives of people with PF.

At one end of the spectrum, Simokaitis helps newly diagnosed people put information about a frightening disease into context when everything seems suddenly and terrifyingly uncertain. At the other, she helps people solve simple tech issues in accessing the Community Registry. “We’ve got a lot of great information about the Registry on our website so, by the time they contact me, people just need help logging in or completing their informed consent form and I’m happy to help,” she says.

I hope it’s satisfying for people to fill out those surveys every six months and know that they’re doing something that helps the fight against PF. It probably doesn’t feel like a lot just to log in and do a survey, but added together, all those surveys are much more than the sum of their parts.

PFF Community Registry Gives Back to Participants

When you enroll in the PFF Community Registry, you’ll be asked to complete two surveys per year. You also have the option to participate in additional research studies. Currently, 92 percent of Community Registry participants have agreed to be contacted through the Registry with optional periodic email surveys designed to collect additional information pertaining to new research questions or initiatives.

But you’ll also get something back, too.

You’ll get a good feeling because you know you’re helping in the fight against PF/ILD by sharing your experiences with researchers.

Every two months, you’ll also receive PFF Registry Connections, the e-newsletter specifically for Registry participants. Each issue keeps you updated on Registry news, as well as insights on PF/ILD-related research and data snapshots from the Registry.

PFF Registry Update Recruitment Week helps ​PFF Community Registry reach research milestone

Jen Simokaitis Manager, PFF Help Center Community Registry surpasses ​2,000 participants!

Recruitment Week was a great success and we now have more than 2,000 research trailblazers enrolled in the PFF Community Registry! Thank you to everyone who participated by joining the Registry or spreading the word!

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“The PFF Registry provides a rich source of data that can generate

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An Inside Look at the PFF Community Registry Of the 2,200+ participants: Nearly two out of three participants are patients only, while 9% are family members only and 8% are caregivers only.

7.9% 8%

Use of Supplemental Oxygen Of the nearly 40% of patient participants who rely on supplemental oxygen, nearly half require it all the time.

21.7%

All the Time 42.5% 42.5%

Patient Only

While Sleeping 33.1%

Family Member Only

8.5%

63.1%

Caregiver and Family Member Patient and Family Member

8.9%

While at Rest 2.8%

With Exertion 21.7%

33% 2.8%

Caregiver Only Patient, Caregiver, and Family Member Patient and Caregiver

The Registry gives a nuanced picture of how PF/ILD affects families: the remaining 20% of participants identify multiple roles with a combination of patient, family member, and/or caregiver.

Twelve people are patients themselves, even as they provide care to another person with PF/ILD!

Patient’s Worst Symptom at Diagnosis Registry data show that nearly 6 out of 10 patient participants experienced shortness of breath at diagnosis as their worst complaint.

3.8% 11%

Shortness of Breath 58.6%

26.7%

58.6%

Cough 26.7% Fatigue 11.0% Other 3.8%

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How are caregivers related to the patient?

Most caregivers in the Registry are either the sibling, parent or spouse of the person with PF/ILD, with sibling caregivers being the most common. A handful are either the patient’s child or grandchild or have another relationship.

Relationship to Care Recipient Parent

Sibling

135

152

Child

Grandchild

22

3

Spouse

Other

124

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!

Patient Knows Their Diagnosis While most patient participants know and understand their diagnoPatient sis, 22% do not.Knows Their Diagnosis While most patient participants know andthe understand theirthe diagnosis, The more PFF can get word

22% notwe orcan arehelp. unsure. out, the moredo people

The more the PFF can get the word out, the more people we can help.

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The Community Registry is a Marathon, Not a Sprint

First Study to Use Community Registry Data Has Been Published Jeff Swigris, DO, is a pulmonologist at National Jewish Health in Denver. He recently became the first researcher to use results from a new researcher-led survey of patients in the Community Registry.

Here’s what he had to say about this milestone project.

What did you set out to study?

My interest is in learning patients’ perspective on how we assess symptoms at one point in time and changes in symptoms over time. Our field, thankfully, has started moving strongly toward a more patient-centered approach in our research.

I think most investigators would agree that patient-centered outcomes should be elevated in importance. Patients are the experts in their disease, so we ought to be asking them what kind of response to treatment feels meaningful to them. My study was aimed at figuring out what “meaningful” means to them.

Kevin Flaherty, MD, MS, chair of the PFF Registry Steering Committee, is known for his passionate devotion to patient care. But he also has another passion: long-distance running.

“Building and developing the Registry is very similar to running a marathon,” he says. “It’s a long-term commitment to an important goal.

We’re reaching that goal one step at a time.”

Just as you can’t expect to go out and run a marathon without putting in time to train and prepare, the same is true of the Registry, Flaherty says. “It takes time to amass enough data to answer research questions. We’ve just passed the Community Registry’s two-year anniversary and completed the first research project using Registry data,” he says. “We’re at the equivalent of being in the first couple miles of a marathon.”

Flaherty says that one of the Community Registry’s most important features is that 92 percent of participants have agreed to

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consider additional research opportunities. And he expects it to be able to facilitate clinical trial enrollment, too. “We can potentially help recruit for clinical trials by matching Registry participants with the relevant diagnosis and geographic area to what researchers are seeking.”

One of his favorite facts about the Registry is that it now has 50-state representation. “It was great day a few months ago when we had a patient from North Dakota sign up,” he says.

“It’s very important to hear from people all over the country.”

How did patients react to your study survey?

Patients aren’t used to filling out questionnaires about survey questions, which is what I give them.

Patients are used to filling out questionnaires like: How severe is your shortness of breath? How severe is your cough? But they’re not used to answering questions about, what numbers do you consider ‘mild’ on this 0-to-5 scale? What numbers do you consider ‘moderate’? It’s a new way of thinking for them.

How do caregivers fit into your research interests?

Patients have an incredible ability to adapt to the struggles that pulmonary fibrosis presents, but

it’s often the caregiver who gives me the straight scoop. Sometimes the caregiver will chime in that the patient doesn’t actually do as much as they’re telling me. Caregivers tend to track the frequency and severity of cough more accurately than patients, who might not notice the extent of their cough because they’re trying to adapt. But caregivers always know. We as clinicians have a deep need to hear more from our patients’ caregivers.

How did the PFF Community Registry help your research?

My research focus is all about patients and patient experience, so without patients, I can’t do any of my research. I think the PFF Community Registry is an absolutely fantastic resource for research—the kind that I do, and many other kinds as well.

What’s the current status of this research?

We have completed this project, and the manuscript is now in press. You can read it here: https://www.atsjournals.org/doi/abs/10.1513/ AnnalsATS.202405-457OC

By joining the PFF Community Registry, you can also choose to be contacted about future research opportunities like this one.

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PFF Community Registry Roundtable

Cheri: I hope researchers will be able to find trends that could help them in their thinking to lead to different kinds of research. I see it as the most useful tool for researchers as long as we’re honest about our daily lives and what we are living at the moment. The survey data can lead us down a real positive path toward finding a really good treatment.

What is crucial about this moment in the Community Registry’s lifecycle?

Amy: Continued participation is vitally important now, as we seek to understand the impact of PF over time. Additionally, we seek to engage more researchers with our Community Registry, posing new research questions and using the data to help solve them.

What makes the Community Registry so special?

We wanted to get a broad range of perspectives, so we asked three people in the PF/ILD community for their thoughts, including:

Leticia: This moment offers a critical opportunity to expand the Registry’s reach. There is growing interest in patient experience data and this effort can further support evidence on what matters most to patients. A comprehensive dataset like this is invaluable for shaping future research.

Amy Hajari Case, MD, FCCP PFF Interim Chief Medical Officer

Leticia Orsatti, MD VP, CDMA TA Group Lead, Boehringer Ingelheim Pharmaceuticals, Inc.

Cheri Riley PFF Ambassador, Patient with IPF

Here’s what they had to say.

What are your hopes for the Community Registry?

Amy: The Community Registry allows us to reach beyond the typical center-based clinical trials.

Participation is not limited by ILD diagnosis or by severity of illness, and people all over the U.S. can participate. By including caregivers and family members, we can reach beyond the patient’s experience and understand the ripple effect on loved ones.

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Leticia: My hope is to leverage the Community Registry as a powerful platform to amplify patient voices in pulmonary fibrosis research. Having recently joined the U.S. based operations, I was struck by the Registry’s depth and thoroughness. It offers an opportunity to better understand patient preferences and symptom impact – all from the patient’s perspective.

Cheri: Now’s the time to really encourage all the PF support groups. We need to tell everyone in our community: Your voice is needed, now and in the future.

Why is it important to include caregivers and family members in the Community Registry?

Leticia: Caregivers and family members play an indispensable role in supporting patients with pulmonary fibrosis. However, there is limited research on their experiences and preferences throughout the patient journey. Including their perspectives in the Registry provides a more holistic understanding of the disease’s impact and may help facilitate the development of additional support systems for both patients and their loved ones.

What advice would you give to someone who is undecided about joining the Registry?

Amy: The Community Registry is a great opportunity to contribute to research with a limited time commitment from the comfort of your own home. Participants also receive information about clinical trial opportunities and the research that comes from their Registry participation.

Leticia: Sharing your experiences in the Registry is such a powerful way to contribute to the fight against pulmonary fibrosis. Your insights can truly help researchers further understand the disease and unmet needs. Consider it an opportunity to make a tangible difference in the lives of others.

Cheri: People may have their reasons for not getting involved. On the other hand, you have an opportunity to give back to the world because you have a rare disease and are living with it.

So why not share what it’s like?

Amy: Caregivers’ involvement is often crucial to their loved ones’ care, including medication management, provider communication, and participation in clinical trials. Their lives are often deeply impacted by a diagnosis of PF, and as we better understand their needs, we indirectly learn how to improve care of patients.

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Mario and Dianne Larrea: Participating in the Registry Together

Joining the Community Registry When Mario and Dianne received an invitation to join the PFF Community Registry, they signed up. “I thought if there’s anything that helps the organization and helps other people, I’m in,” Mario says. “I want to be an active participant as long as I can and give information from my perspective that could be beneficial to others.”

Becoming a PFF Ambassador and participating in the Registry have been very rewarding experiences for me. I’ve gained a lot of insight by seeing the types of information researchers want to know about my experiences as a patient.

As for Dianne, she thinks both the PFF and the Community Registry are valuable resources.

“I’m glad that Mario’s decided to be so involved and I appreciate the chance to share my experiences as a caregiver, even though I don’t have to do much for Mario yet because he is in good shape,” she says. “Being involved gives me a way to plug into a network that, even as a nurse, I didn’t know anything about IPF. Asked if he minds completing Registry surveys every six months, Mario shakes his head. “I have nothing but time, and they’re always interesting,” he says. “What we get back is so much greater than what they’re asking us to put in, really.”

Mario Larrea

Scott Staszak: The PFF’s New President and CEO When retired mechanical engineer Mario Larrea of Tampa, Florida, was diagnosed with IPF in 2020, he was devastated. “I thought I would just have to sit around and wait to die.

Then I found the PFF and realized there is a lot of hope,” he says, noting that his work as a PFF Ambassador has given him renewed purpose.

Mario’s time to diagnosis was relatively short, given that both his wife Dianne and her sister are nurses and soon noticed his shortness of breath.

“I think Mario has a problem with his lungs,” the sister said during a visit. A trip to a pulmonologist and extensive testing soon followed.

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“Mario was fortunate to receive his diagnosis quickly, even though there’s not much the doctors can do for him,” Dianne says. “At least we have a plan in place and know he needs to be monitored for any changes.”

Dianne has used her medical knowledge to help Mario cope with side effects from the medication.

“There have been times when I’ve had to tell him, ‘I think you need to take a break, give your body a rest’ because he has a lot of gastrointestinal upsets and sometimes he over-exerts himself in the heat,” she says. “At some point you have to realize that you might have some limitations, but Mario’s good about keeping a pulse oximeter with him and taking oxygen if he needs it.”

In July 2024, the PFF’s Board of Directors was proud to name Scott Staszak President and CEO. Most recently serving as Acting President and CEO, Scott has served the PFF in many leadership roles since arriving at the foundation in 2011.

Scott was previously the PFF’s Chief Operating Officer and directed the implementation of the strategic plan and managed education, research, finance, development, human resources and IT operations. He has been instrumental in launching the PFF Registry, PFF Scholars, and Clinical Trial Finder, and continues to be involved

with these and other important PFF initiatives.

In addition to his professional experience with the PFF, Scott has a personal connection to pulmonary fibrosis. His mother died of idiopathic pulmonary fibrosis in 2015.

We have a tremendous responsibility to patients, their family members and loved ones. I look forward to collaborating with all members of the community to provide better solutions for everyone impacted by pulmonary fibrosis.

Scott Staszak President and CEO Pulmonary Fibrosis Foundation 15

Researchers Continue to Rely on the Original PFF Patient Registry

Before the start of the Community Registry, the PFF collected data, radiology images and biospecimens from 2016-2022 on 2,000 patients with ILD being seen at PFF Care Centers. These data remain available and are still being used by researchers to boost the scientific community’s growing body of knowledge.

Looking for CT Biomarkers Tejaswini Kulkarni, MD, MPH, is the director of the interstitial lung disease program at the University of Alabama at Birmingham and a member of the PFF’s Care Center Network Steering Committee and chair of the Scientific Review Committee for the PFF Registry. Her research focuses on developing imaging biomarkers to predict and assess response to therapy among patients with ILD. 16

“All fibrotic interstitial lung diseases are progressive, but they’re variable in disease course,” Kulkarni says. “What we don’t understand yet is why during one patient’s disease course lung function remains stable and why another patient who presented with the same exact numbers at the time of diagnosis progresses much more rapidly or does not respond to therapy as well as other patients do.”

Special Research Opportunity The Registry currently has 44 patient/caregiver pairs.

We need more such pairs in the Registry to help boost this study and others!

Kulkarni’s most recent research project uses the patient CT scans stored in the PFF Patient Registry to study whether pulmonary surface area acts as an effective imaging biomarker. They are using a technology developed to study liver cirrhosis to study the CT scans of Registry patients. “We’re seeing that there are irregularities that are much more common compared to healthy lungs,” she says. “And with the patients with idiopathic pulmonary fibrosis (IPF), those with higher scores on this pulmonary surface irregularity scale did worse over time. We might be able to use this to predict patient outcomes in the future.”

She says this study will be published soon, following successful presentations at two radiology conferences.

Does Airway Size Matter?

Kristin Berger, MD, is a new PFF Scholar and a pulmonologist at Weill Cornell Medicine in New York City. Her PFF-funded research project also uses CT scans from the PFF Patient Registry and reflects her focus on trying to identify early-stage disease with the hope of ultimately improving outcomes. “CT scans in general are a wealth of untapped knowledge. Our hypothesis is that

We want to take the very best care of our patients with interstitial lung disease and their caregiver is one of the most important parts of that care. We also want to protect caregivers’ health and ability to tend to their own needs and live their best lives, too.

Lanier O’Hare, PhD, RN Nurse Practitioner University of Alabama at Birmingham

individuals with larger airway diameters are at increased risk of having abnormal chest imaging that may indicate early ILD,” Berger says. “With the PFF Patient Registry we can analyze patients’ CT scans who were already diagnosed with ILD for airway diameter. Then we will correlate our quantitative findings with outcomes data for those patients.”

Quality of Life in CTD ILDs Lanier O’Hare, PhD, RN, a nurse practitioner at the University of Alabama at Birmingham, wanted to better understand a specific group of ILD patients, those with connective tissue disease-related interstitial lung disease (CT-ILD).

“The impetus for my research was to do a deep dive on quality of life in connective tissue disease-related interstitial lung disease. “Some of the CTD ILDs behave in a similar fashion to IPF, which we know a lot about, but there’s really not quality of life data in the CTD ILD subpopulation of patients.”

O’Hare suspected that these patients’ quality of life is relatively low. “This is a very special group who also has rheumatological factors that might impair their quality of life in addition to their pulmonary problems,” she says. Using Registry data, she studied how disease type and duration, supplemental oxygen use, pulmonary rehab participation and demographics affected quality of life.

“I expected younger age, female gender, and African American race to all predict a poor quality of life,” O’Hare says. “But Registry data showed that the only demographic factor that was associated with poor quality of life and CTD ILD was female gender.” Next, O’Hare hopes to use Community Registry data to study the patient-caregiver dynamic in PF/ILD. 17

PROLIFIC Consortium Successfully Tests Biomarkers

PRECISIONS Trial Begins to Publish Data

Imre Noth, MD University of Virginia

After several years of hard work, the Prognostic Lung Fibrosis Consortium (PROLIFIC) has achieved some important successes. This working group of 12 industry partners and two foundations (including the PFF) has worked cooperatively to develop and validate tests that can detect blood biomarkers in patients with PF/ILD. PROLIFIC identified and studied 12 potential biomarkers of IPF in four categories: epithelial damage, fibrosis, inflammation and thrombosis.

The consortium successfully developed an assay to test for the 12 proteins. “Along the way, we dropped one protein from the test because it didn’t turn out to be as reproducible as we hoped,” says Peter Schafer, PhD, scientific vice president at Bristol Myers Squibb.

Once they were comfortable with how well their new test worked, consortium members used it to test blood samples from the PFF Patient Registry.

“We asked the question, which of these proteins are associated with lung function decline and/or transplant-free survival?” Schafer says.

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The results were exciting: eight proteins were associated with lung function decline as measured by reduction in forced vital capacity.

And four proteins that were associated with transplant-free survival. The PROLIFIC team presented these results at the American Thoracic Society’s 2024 conference.

Next up: the consortium is working on a model that combines the best biomarkers into an algorithm that could someday allow a practitioner to calculate a combined score that might help predict outcomes for a specific patient. “We hope this score may be useful in a Phase II clinical trial setting,” Schafer says. “We will also be talking to the FDA and seeking their advice about how they want to review it.”

PRECISIONS is a multicenter clinical trial that relies on PFF Patient Registry data and biosamples. In one of the largestever governmental grants for PF-related research, PRECISIONS has received $22 million in funding from the National Heart, Lung, and Blood Institute (NHLBI) and the Three Lakes Foundation.

The trial is the first ever to apply precision medicine principles to diagnosing and treating IPF. PRECISIONS completed patient enrollment in January 2024. The study includes a two-year follow-up period, so data collection will end in January 2026. But, in the meantime, the researchers are able to publish a lot of interim data from PRECISIONS. In mid-2023, the PRECISIONS team, co-led

by Imre Noth, MD, of the University of Virgina, published a paper discussing the effectiveness of the team’s proteomic predictor. “It has an absolutely gaudy ability to predict which IPF patients will progress and which won’t,” he says.

“And I use the word gaudy intentionally, because we were able to predict outcomes 94 percent of the time. That’s more accurate than clinician opinion, which is what we’ve been relying on up until now.”

Since then, Noth has published five more scientific papers, all of which use Registry data, with at least a dozen more in various stages of completion as other PRECISIONS authors use some of the vast amounts of “omics” data that machine learning and AI are making possible.

Fernando J. Martinez, MD, MS, Vice-Chair, Clinical and Translational Research of U Mass Chan Medical School , is the co-principal investigator of PRECISIONS. He is also the Academic Chief of Pulmonary, Allergy, and Critical Care Medicine.

Imre Noth photo courtesy of Dan Addison

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Thank You to Our Community As the PFF Community Registry begins its third year of data collection, we want to publicly thank you for your early and continued support of the PFF Community Registry! We hope you are gratified to see its continual growth and transformation into an ever-larger, more inclusive community.

The PFF is very fortunate to have such strong, committed support to advance what is already a powerful research tool that will only become more valuable over time. Every bit of support we receive helps this crucial scientific endeavor thrive.

The PFF gratefully acknowledges the lead sponsors of the PFF Registry: Genentech, a member of the Roche Group Founding Partner

Boehringer Ingelheim Sustaining Partner

United Therapeutics Visionary Partner

Chiesi Farmaceutici S.p.A. Developing Partner

PFF REGISTRY DONORS*

2013 Pete DeVito Memorial Foundation Golf Outing

Genentech

Ms. Nelda Hagaman

Boehringer Ingelheim Pharmaceuticals, Inc.

The Hales Family Foundation, Inc.

United Therapeutics Corporation

The Buckeye Foundation

Mr. and Mrs. Paul and Susan Bergna

Mrs. Sally Willis

Bristol-Myers Squibb

InterMune, Inc.

The Goldhirsh-Yellin Foundation

Mr. Mike Henderson

The Cowlin Family Fund

Mr. and Mrs. Fred and Virginia Krauss

G. Johanneson Family Foundation

Peter L. O’Neill Memorial Fund

Steffy Family Foundation Fund

Stoelting Co.

Three Lakes Foundation

2015 Hike Around Mont Blanc

Minnesota Pulmonary Fibrosis Support Group

Rattner Family Foundation, Inc.

Rouine Run

Mr. Bill Amick

Mr. and Mrs. Chuck and Monica McQuaid

Biogen, Inc.

Mr. John Murray

Michael P. Savoca Memorial Foundation

* Donor List of $5,000+ as of June 30, 2024

We also wish to send sincere thanks to all our PFF Registry donors, large and small.

Together, we can work to recruit new participants and inspire the 2,200+ people already in the Registry to engage with us more deeply via surveys every six months.

We will also continue to rigorously evaluate and support research efforts using our rich source of data. Creating, developing and operating the Registry is a significant undertaking, and with your ongoing support, we are confident that it will lead to unprecedented successes for our community.

The PFF gratefully welcomes financial donations of any size to support the PFF Registry.

Contact Jennifer Mefford, PFF Vice President, Corporate Partnerships, to discuss corporate sponsorships of the PFF Registry at partnerships@pulmonaryfibrosis.org.

Make your secure donation today.

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Here’s How You Can Help the PFF Community Registry 11 Visit the PFF Registry 1 1 1website and click

22 Complete Screening 33 2 2 2 and Informed Consent3 3 3

“Join the PFF Community Registry”

Forms, plus your enrollment survey, via secure online portal

44 Get updates, including 55 Spread the word: Patients, 4 4 4monthly emails and 5 5 5 lung transplant recipients, biannual newsletters

PFF makes enrolling in the Registry as easy as possible! Your enrollment is invaluable to those of us who live with pulmonary fibrosis. Please join today. It’s a simple process that will help researchers find a cure. We need you!

Cheri Riley Rochester, New York PFF Ambassador, Patient with IPF

caregivers, and family members can join!

Complete follow-up surveys every six months, plus optional substudies

Your actions can make a world of difference towards a world without pulmonary fibrosis!