Launched in 2016, the PFF Patient Registry was created to compile large quantities of data collected from anonymous PF patients, and use it to help researchers obtain more insight about the disease and find potential new treatments.
“The PFF Patient Registry is a major resource designed to accelerate progress in pulmonary fibrosis research and in understanding the causes of PF,” Kevin R. Flaherty, MD, steering committee chair of the PFF Patient Registry and PFF Care Center Network, said in a press release.
“Since the registry launched, we’ve seen a tremendous response from the research community and are eager to assist them in answering key questions about the disease,” Flaherty said.
Patients in the registry were enrolled through the sites comprising the PFF Care Center Network. By collecting data from the patients’ medical records it was possible to create a database with patients’ ages, gender, symptoms, diagnoses, test results (including high resolution CT scans and blood samples), medications, and clinical outcomes.
Researchers interested in using the data available in the registry are invited to submit proposals covering different areas of PF research, including causes, diagnoses, and treatments. The PFF opens applications three times a year.
“The registry is an example of a critical open-access resource containing phenotypic clinical data and biospecimens that can be leveraged by investigators to enhance recruitment and retention of patients for clinical trials, as well as support ancillary or independent mechanistic studies to better understand the etiology of pulmonary fibrosis,” said James P. Kiley, MD, director of the division of lung diseases at the National Heart, Lung, and Blood Institute.
One interesting feature of the registry is the possibility of enrolling patients who are interested in participating in clinical trials.
“We are proud to support the PFF Patient Registry to help advance science and have a positive impact on the pulmonary fibrosis community,” said Ben Kramer, MD, vice president for U.S. medical affairs at Genentech, one of the registry’s founding partners.
“This significant enrollment milestone underscores patients’ dedication to supporting research as scientists strive to better understand pulmonary fibrosis,” Kramer added.
The PFF Patient Registry reached half of the registry enrollment target with its 1,000th patient in May 2017.
Over the next few years the PFF, with additional funding, plans to enroll more patients and include additional sources of data for the registry.
The development of the PFF Patient Registry was possible not only through Genentech’s funding, but also through the support of foundations, corporations, and individuals who have been affected by PF and who believe the registry is crucial to ultimately improve the lives of patients.
For more information about the PFF Patient Registry, you may watch this video.