The PFF Registry Extends into the Community

Physicians currently have no way to predict the course of any individual case of PF, but the PFF Registry is working to change that. By following large numbers of PF patients over time through the PFF Registry, we are already learning more about the best way to care for patients, including managing symptoms, improving quality of life, and more. 

The PFF Registry is collecting data from patients, caregivers, and family members nationwide to help researchers find answers on pulmonary fibrosis. The Registry needs voices from all different diagnoses, regions, races, ethnicities, ages and lifestyles in order to provide the clearest picture of the disease for researchers. The PFF Registry has two distinct data sets:

• The PFF Care Center Registry collects medical data from thousands of patients and is administered by PFF Care Centers across the country. Data from participants' usual medical care is uploaded into the Registry by a Care Center data coordinator.
• The PFF Community Registry gathers data directly from participants via an easy-to-use online portal. Surveys can be completed at your own pace and in the comfort of your own home.

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.

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

Finally, as a part of the PFF Registry, you will receive newsletters so you can see how your information is helping shape the future of PF research.