Familial IPF Research Study: APPLe
What is the APPLe study?
The Advancing Prevention of Pulmonary Fibrosis (APPLe) study is a national study that aims to improve detection and diagnosis of idiopathic pulmonary fibrosis (IPF) by learning more about pulmonary fibrosis and how it develops. We want to understand if the disease can be detected early, before the lung is permanently scarred.
The APPLe study sought to enroll 1,000 participants who are not currently diagnosed with pulmonary fibrosis, but who have at least two family members who have been diagnosed with pulmonary fibrosis. At least one family member with pulmonary fibrosis needs to be a first degree relative (parent, sibling or child). Study participants must be between the ages of 40-75. Because there is an increased risk within affected families, this cohort will allow us to learn how pulmonary fibrosis develops, and how the lungs change over time.
The study is funded by the National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute (NHLBI).
The APPLe study has completed their enrollment. An update on the study to come soon. Have questions on the study? Send an email to Rachel Warren, Clinical Research Program Manager of the APPLe Research Study, with the subject line APPLe
study with your question.
What are the goals of the study?
Who is leading the study?
The APPLe study is led by principal investigator Dr. David Schwartz. Dr. Schwartz is a Distinguished Professor of Medicine and Immunology at the University of Colorado – Anschutz Medical Campus. He has made numerous contributions toward understanding the role that biological and genetic determinants play in the onset of diseases, in particular pulmonary fibrosis.
“I’ve always thought that if we understand what’s causing pulmonary fibrosis, we’ll be in a better position to treat, and maybe even prevent, this disease. This study is the next step in advancing our understanding of how genes and the environment interact to cause pulmonary fibrosis.”
How is the Pulmonary Fibrosis Foundation involved?
Our research would not be possible without the support of the Pulmonary Fibrosis Foundation (PFF). Representatives from the PFF and the PFF community participate in our Stakeholder Advisory Group. Further, the PFF has facilitated recruitment for us of study participants at their healthcare conferences, the PFF Summit and the PFF Education Symposium, and to speak at support groups across the country. The PFF is now partnering with the study investigators to keep participants engaged throughout the study process and by helping investigators identify patients and unaffected family members that can provide advice to the study team. If you are interested in helping the PFF and the study team in this way, please send an email to Rachel Warren, Clinical Research Program Manager of the APPLe Research Study.
What is it Like Being a Research Participant?
Participant Testimonial
Featuring Kelley McAllister
Why did you join this study?
My mother, grandmother, and youngest aunt all died from PF, and at least one other family member has the disease currently. My mom found out about the study just shortly before her death and I know it would have meant a great deal to her that I participated. That's why I joined initially...however, my current reasoning is that it turns out it matters an incredible amount to ME. I get to take action to possibly help myself, my children, and my extended family, and it makes me feel closer to my mom. My first set of bodily fluid donations happened to coincide with the month of my mother's death and it actually helped me in my grieving process.
What has been your experience with the FPF research group?
I've been pleasantly shocked by how responsive and caring each member of the team has been. I feel like they all actively care about me and about my family's story, which has given me a sense of belonging. So few people out in the world are familiar with PF and sometimes it can feel like no one really understands what it's like to experience the disease. This is a group of people who know and who really want to make a difference, and it shows.
What do you value about the FPF research studies?
Participating in moving forward a better understanding of the disease, as well as the comfort of knowing that I'm in the loop, somehow. I feel safer knowing that I have a baseline for comparison should I ever get diagnosed, and that I can communicate with those in the forefront of the research. I'm the sort of person who believes that knowledge is power and this study makes me feel as if I'm gaining personal knowledge as well as participating towards advancing the collective knowledge. Plus, it's heartening to feel as if I'm doing something about it rather than just waiting for the day when I might possibly get diagnosed myself.
What have you learned after participating in our studies?
I've learned what these diagnostic tests (CT scan and full PFTs) are like. My mom was scared of these tests and it's comforting to experience them theoretically first, so that if I ever have to experience them as a diagnosed patient they won't be an unknown. Plus, now I know all of my baseline results, so I know I'll have something to refer to if I ever need that.
Has any part of being a research participant surprised you?
I've been surprised by how meaningful it feels to me. I've found myself seeking out other medical studies I can participate in, such as myconnect.cancer.gov. It's easy for me to feel hopeless, as if there's nothing I can really do to change all the suffering in the world, and these studies give me a sense of purpose that I wouldn't have expected as well as that same little rush that you get from doing a good deed. This just happens to be a good deed that could also actively benefit my daughters or my future self!
What would you tell someone who’s considering joining?
That this is a chance to do something good for the world with very little work. That it can bring meaning to the loss of a loved one, or meaning to living with a terrifying diagnosis. That none of it has been scary or stressful (in fact, it's been the opposite).
What are your hopes for the future of IPF research?
I'd love to be able to see this disease coming from further away. The only good news about my family members having had PF is that we're well-informed and know how to protect ourselves to the degree possible--and I hope that the research will help all of us eventually learn additional preventive measures. In a perfect world I'd love to someday be able to test myself to know if I'm at risk - and do the same for my children. Imagine how we'd feel if those tests could relieve us of fear?, or if the research leads to more effective treatments? I actively experience comfort just imagining those outcomes, and knowing that I'm acting to bring them about - to the best of my ability.
