Join the PFF Community Registry
The PFF Community Registry is fostering a community of patients living with PF and ILD, lung transplant recipients who have had PF or ILD, caregivers and biological family members of patients with PF or ILD, including those who have passed away. The Registry's goal is to advance medical research to improve the lives of patients with pulmonary fibrosis. Help us move toward a cure for PF and ILD.
Ken Vella, Patient
Wake Forest, North Carolina
If we have more data on the Registry, it becomes more reliable and more dependable. Researchers will be able to draw better conclusions about this disease.
PJ Kamani, Patient
Wethersfield, Connecticut
A diagnosis of pulmonary fibrosis affects not only patients but also our family members and loved ones. The PFF Community Registry is important because pulmonary fibrosis is a new disease compared to other lung diseases that get more attention. I hope researchers and companies will use the Registry to make life easier for all of us.
Valeria Hatcher, Patient
Mesa, Arizona
The PFF Registry Extends into the Community
In July 2022, the PFF Community Registry was launched to gather self-reported information from patients living with PF and ILD, lung transplant recipients who have had PF or ILD, caregivers and biological family members of
patients with PF or ILD, including those who have passed away.
The Community Registry is the first self-reported registry for all community members affected by PF or ILD. Each case and experience is unique and much about these diseases remains unknown. Knowledge is the first step in understanding how to positively help all those impacted by these diseases.
The more individuals enroll and provide ongoing data, the more answers we can find on the best way to care for patients and support their caregivers and family members. This information will ultimately help us better care for patients, including managing symptoms, improving quality of life, and more.
Who can join?
- Patients living with pulmonary fibrosis (PF) or interstitial lung disease (ILD)
- Lung transplant recipients who have had PF or ILD
- Caregivers and biological family members of patients with PF or ILD, including those who have passed away
Participation is easy – complete just two online surveys each year for a total time commitment of about two hours annually. Answer simple questions about your experience, including demographics, diagnosis, education and employment, environmental
exposures, and more. Your participation in the Community Registry is vital to helping researchers find answers to better diagnose, treat and potentially cure PF and ILD.
Informed Consent
You can read the informed consent document for the PFF Community Registry.
Voluntary Participation
Participation in the PFF Registry is voluntary. Although we hope you will enjoy the sense of community and contributions you are making, you can stop participating at any time. Watch the video demonstration below for a step by step tutorial.
Download Flyers
Download our flyers below to share with family, friends, healthcare providers, and others.
Data Security
The PFF Registry database is highly secure, using the same technology trusted by doctor’s offices, hospitals and clinical trials worldwide. How much information you want to share with researchers is up to you. You can decide whether or not to allow
researchers to contact you for additional studies such as clinical trials.
Ongoing Engagement
As a part of the PFF Community Registry, you will receive periodic research and other updates via the PFF Registry newsletter so you can see how your information is helping shape the future of PF research.
Donate Today
Your gift to
the PFF Registry will enable us to expand patient enrollment and
provide even greater access to investigators as they search for a cure
for PF.
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. Review our privacy policy.
PFF Registry News
View the latest news and updates about the PFF Registry.
Contact Us
For information about the PFF Registry, contact registry@pulmonaryfibrosis.org.
PFF Registry
Patient Powered. Data Driven. Research Results.