PFF Patient Registry


The First Step to a Cure

The Pulmonary Fibrosis Foundation (PFF) is leading the charge to find a cure for pulmonary fibrosis, and the first step is to increase our knowledge of PF, a family of diseases that impacts the lives of so many. To achieve this, the Foundation sought input on unmet needs from PF clinicians, scientific leaders, and the patient community. It became clear that the absence of a large nationwide patient registry and biorepository was keeping researchers from taking critical steps toward a cure.

REGISTRY AT A GLANCE

Total Enrollment: 1,381

 % Participating in biorepository
                                    90
 Average follow-up time of participants
                                    7.7 months
 % Approximate data completion
                                    97

 
Patient Diagnosis (% of enrollments)

 IPF                                             55.9
 Idiopathic interstitial pneumonia
 (other than IPF)
                                               12
 CVD/Auto-immune                                             17.7
 Hypersensitivity pneumonitis
                                              9.3
 Drug or Occupational exposure
                                              1.2
 Other                                               3.8

Thank You to Our Supporters

 
 
   
   The Cowlin Family Fund
at the
Chicago Community Trust

In addition to Genentech, the first phase of the PFF Patient Registry is funded through the support of visionary partner Boehringer Ingelheim, The Cowlin Family Fund at the Chicago Community Trust, the Rattner Family Foundation, the McQuaid Family Foundation, InterMune, Biogen and the Jenny H. Krauss and Otto F. Krauss Charitable Foundation Trust, in memory of Stephen N. Dirks. Each of these donors shares in the belief that a comprehensive registry is fundamentally important to improving the lives of those affected by the disease. The PFF is seeking additional funding sources to expand the Registry to 6,000 patients by 2020.​

​To support the empowerment of the PF community and the investment in research for better treatments and a cure, please donate now. For more information, call 844.TalkPFF (844.825.5733) or email pcc@pulmonaryfibrosis.org.

what is the pff patient 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 about how each person’s diagnosis was made, symptoms from PF, medial test results, the use of medications used to treat PF, and even captures information about how people are during years after enrolling. After thousands of people living with PF share their medical information with the Registry, scientists will be able to use the Registry to discover the causes of PF and help lead us toward a cure.

All Registry data will come from patients seen at PFF Care Center 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.

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.

NEW: For details on the Registry, you may download the Registry protocol here.

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


  • NEW: For details on the Registry, you may download the Registry protocol here.

    How can patients participate in the pff patient registry?

    Patients with PF who are being seen at any of our participating Care Center Network sites may be eligible to participate in the Registry. View map of CCN sites

    Participation does not require additional visits or changes to your medical care or PF treatment. Patients will be asked to share their de-identified medical data with the Registry, complete short questionnaires during each appointment, and possibly contribute a blood sample to the biorepository.

    If you are a patient interested in participating, contact the care team at your CCN site to learn more. 
    ​

    How can I USE THE registry FOR MY RESEARCH?

    We encourage the use of the Registry for all kinds of research into ILD and PF. The resources may be used exclusively to conduct retrospective research or incorporated into a prospective study design.

    Proposals for the next review cycle are currently being accepted through July 27th, 2017.

    To submit a proposal, please use this form.

    The PFF Ancillary Studies Policy can be reviewed here.

    We encourage review of the data collected in the Registry to ensure that we have the data that you would need to conduct your research. You may download the full Registry casebook here.

    How will the PFF Patient Registry benefit patients?

    All data included in the PFF Patient Registry will be used to foster research to better understand PF, drive toward a cure, and improve the lives of those living with PF. See the chart below.

    (Click to view full size image)
    click to enlarge

    How is the PFF Patient Registry funded?

    The PFF Patient Registry is funded through the generous support of corporations, foundations, and individuals who have been impacted by PF. With a shared belief that a comprehensive registry is fundamentally important to improving the lives of those affected by the disease. If you would like to contribute to this important program, please donate now.

    For more information, call 844.TalkPFF (844.825.5733) or email pcc@pulmonaryfibrosis.org.
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