Frequently Asked Questions
What is the PFF Registry?
The PFF Patient Registry is a valuable research tool available in the fight against PF. People living with PF who choose to enroll in the registry share detailed medical information that will be used for research. The registry contains information including:
- Patient demographics
- How each diagnosis was made
- Test results, including pulmonary function tests
- Medication use
- Patient reported quality-of-life data
- Medical outcomes such as hospitalization,lung transplantation and death
- Opportunity to volunteer blood samples for research and biomarker development
- High Resolution CT (HRCT) images will be uploaded into the Registry for future research
By collecting participating patient data, blood samples and high-resolution CT scans over time, we will increase our understanding of what a typical disease course might be in PF. Researchers also use the Registry to study diagnostic and predictive biomarkers. Doctors will be able to use this information to improve PF treatment and patients’ quality of life. Observational research like the Registry complements interventional research. Clinical trials, a type of interventional research, are needed to directly compare one treatment to another.
All Registry data will come from patients seen at PFF Care Center Network (CCN) sites, ensuring standard collection of high-quality information. The information is always de-identified, which means that researchers who use it can never learn whose medical data it is.
What Are the Goals of the Registry?
Research is the pathway to a cure for PF. The Registry’s combination of data from so many patients, including those with less-studied forms of PF, will generate an unparalleled resource for future research into treatments and provide data for improving and reassessing evidence-based care guidelines.
Our initial target is the collection of data from 2,000 patients with all kinds of PF to create the largest research resource of its kind in support of the following goals:
- Collect medical information to support research that develops new ways to improve the quality of the lives of people with PF
- Create a Registry of patients with PF for participation in additional research studies in the future
- Collect data on the patterns of clinical care delivered at PFF Care Centers, which can improve our understanding of the most effective ways to care for people with PF
Over time, and with additional funding, we aim to:
- Increase the sources of data we can gather, for example by adding data from patients’ local pulmonologists
- Gather more blood samples from Registry patients in order to look at the relationships between biomarkers and clinical data over time
- Enroll more than 2,000 patients to better study each different type of disease causing pulmonary fibrosis
- Share this resource with as many researchers as possible to support research into the understanding of pulmonary fibrosis
- Use Registry data to continuously reassess and improve evidence-based clinical guidelines
What is the Biorepository?
Registry participants may choose to contribute a blood sample to be stored for future research. When combined with the information in the Registry, these samples will help scientists find new causes of PF, track the effects of PF treatments, improve the ways doctors diagnose and manage people living with PF, and help discover new treatments.
What is Observational Research?
The PFF Patient Registry is an observational research tool. That means we record participants’ experiences with PF to learn all we can about the disease and how to treat it. Participants don’t have to change their medications or how often they see their physician. The Registry will follow thousands of participants for as long as they are able to participate. This means huge amounts of patient data will be made available to researchers.
Observational research is not designed to answer questions about whether one treatment is better than another—that is the purpose of clinical trials. The Registry is helping to answer other important questions like:
- What factors determine who should take anti-fibrotic treatments?
- How does the use of supplemental oxygen change the risk of being hospitalized?
- How do hospitalizations affect survival?
- What role does patient race play in survival?
How Can I Use Registry Data for my Research?
The PFF invites interested clinical and translational investigators to utilize Registry data. Both academic and industry researchers are welcome to apply. Investigators who are not members of a Registry team must include a Registry investigator as a collaborator on their proposal. Researchers can access the Registry upon submission and approval of a research proposal. To begin your application, click here, and download the Registry protocol here. If you have questions about submitting research proposals, contact us at email@example.com.
The PFF currently reviews research proposals three times per year.
As of June 30, 2019, Registry-based research includes 17 studies — six of which have gone from abstract to manuscript development. Four are using biosamples or imaging from the Registry. Selected abstracts and manuscripts in progress include:
- Patient Characteristics Associated with Anti-Fibrotic Medication Use in the PFF Patient Registry
- Analysis of Chest CT in IPF: Protocols and Timing of Imaging Studies in the PFF Patient Registry
- Presence of Biopsy and Geographic Region Predict Discussion at Interstitial Lung Disease Multidisciplinary Conference
- Lipoproteins in Interstitial Lung Disease
- Impact of Pirfenidone on Quality of Life
Who Manages the PFF Registry?
The Registry is managed by the Data Coordinating Center at the Statistical Analysis of Biomedical Education and Research (SABER), University of Michigan. SABER data scientists work with applicants to hone their ideas and to confirm that the Registry data can support the proposed study. Their support continues throughout the research process, up to and including preparing manuscripts for publication.
Additionally, each patient in the registry receives care at the PFF Care Center Network (CCN) site. Experts in pulmonary medicine, rheumatology, radiology, pathology, and nursing who specialize in interstitial lung disease make up the care team at each PFF Care Center. The Care Center Network forms the infrastructure of the PFF Patient Registry. All 2,000+ Registry participants receive their medical care at a PFF Care Center. In this way, consistent and accurate data collection by trained site coordinators protects the Registry’s integrity.
- How Can I Share this Information?
Sign Up for PFF Registry Emails
Be the first to know when the PFF Registry opens for enrollment
Your gift to
the PFF Patient Registry will enable us to expand patient enrollment and
provide even greater access to investigators as they search for a cure
Your Privacy Matters
The Pulmonary Fibrosis Foundation Registry considers the protection of your privacy to be one of our most important responsibilities. We have set up strict protocols to protect your personal information.
To review our policy, click here.