The Pulmonary Fibrosis Foundation (PFF) has announced that 1,000 Americans with pulmonary fibrosis (PF) have enrolled in its Patient Registry. The goal is to enroll another 1,000 patients by the end of 2017 and expand to 6,000 patients by 2020.
The Chicago-based PFF hopes to support the development of novel PF therapies and help patients live better lives. The registry gives researchers access to patient profiles, disease progression and response to treatments.
“The Patient Registry will serve as a powerful tool in fully understanding how to diagnose, treat and eventually cure pulmonary fibrosis,” Dr. Kevin Flaherty, chair of the PFF Patient Registry, said in a news release.
The registry is managed through PFF’s Care Center Network (CCN), which comprises 40 medical centers across the nation. The CNN’s objective is to provide a multidisciplinary support and care to PF patients. CCN sites guarantee that patients receive standard treatment procedures and that collected data is properly managed. Patient data include details on diagnosis, test results, therapies received and outcomes, such as hospitalization, lung transplantation and mortality.
Registered patients may also provide blood samples to a biorepository, which can be used in future research studies. These samples may also help researchers investigate the mechanisms underlying PF and, combined with other patient data, may lead to the development of novel treatments against fibrosis.
“The strong enrollment in the Registry reflects the unwavering commitment of patients with pulmonary fibrosis to fight this disease and advance the science,” said Dr. Benjamin Kramer, vice-president for U.S. medical affairs at Genentech, one of the registry’s founding partners. “We are proud to support this incredibly important initiative to further research and impact the lives of people in the pulmonary fibrosis community.”
Along with Genentech, other donors supporting the PFF Patient Registry include Boehringer Ingelheim, InterMune, Biogen, the Rattner Family Foundation, The Cowlin Family Fund at the Chicago Community Trust, the McQuaid Family Foundation, and the Jenny H. Krauss and Otto F. Krauss Charitable Foundation Trust.