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.
TOTAL ENROLLMENT: 2,003
% Participating in biorepository
|
81.5 |
Average follow-up time of participants
|
26.2 months
|
| % Approximate baseline data completion |
98 |
|
PATIENT DIAGNOSIS (% of enrollments)
|
|
| IPF |
61.0 |
| Idiopathic interstitial pneumonia (other than IPF) |
10.4 |
| CVD/Auto-immune |
15.4 |
| Hypersensitivity pneumonitis |
7.8 |
| Drug or occupational exposure |
1.2 |
| Other |
4.2 |
How can I USE THE registry FOR MY RESEARCH?
How can patients participate in the pff patient registry?
Enrollment in the PFF Patient Registry is currently closed. Future enrollment opportunities will be announced on this webpage and via the Foundation's monthly newsletter and social media.
The PFF Patient Registry Report
We are pleased to share the PFF Patient Registry Report, which illustrates the knowledge that can be achieved through this unique research resource. To date, more than 23 abstracts and manuscripts have been developed using Registry data at no cost to researchers.
