The PFF Registry is a nationwide research program that encapsulates various databases that aim to accelerate research on pulmonary fibrosis (PF) and interstitial lung disease (ILD).

Our program enables researchers and health care providers to get closer to a cure for PF and ILD. Information gathered will be used for scientific analysis in attempts to better understand how PF and ILD progresses over time and responds to treatments and how the disease affects individuals with PF or ILD, caregivers, and family members.


PFF Community Registry

The PFF Community Registry began in July 2022 to collect ongoing participant-reported data directly 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

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PFF Patient Registry

Launched in 2016, the PFF Patient Registry, collects medical data from up to 2,000 patients and is administered at participating PFF Care Centers across the United States.

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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

PFF Registry

Patient Powered. Data Driven. Research Results.