The Pulmonary Fibrosis Foundation (PFF), an organization whose goal is to raise awareness, offer disease education, advance care, and fund research in the field of pulmonary fibrosis (PF), announced in a press release that Genentech, a biotechnology company part of the Roche Group, will assume the role of Founding Partner on the PFF Patient Registry program. Genentech will fund both the PFF Patient Registry and the PFF Care Center Network’s (CCN) signature programs.
“We are thrilled with Genentech’s unrelenting commitment to the PF community, which will continue to make a significant difference in the lives of those affected with PF,” said Patti Tuomey, EdD, President and Chief Executive Officer of the PFF, in the release. “As the Founding Partner for the PFF Patient Registry, Genentech’s support is invaluable as we work to grow our key programs aimed at advancing patient care and providing critical support for patients and their families.”
PF is an aggressive lung disease that currently has no cure. The condition has a particularly poor prognosis and around two-thirds of the patients die within five years after being diagnosed. It is estimated that almost 130,000 individuals in the United States and 5 million worldwide suffer from the disease.
The PFF Patient Registry is a national initiative launched by PFF to collect medical data from PF patients in order to advance ongoing research. The Registry is expected to allow scientists to deepen their understanding of the different forms of disease progression, the individuals affected by the disease and how PF patients respond to the different treatment regimens. The data obtained will also help to determine the best practices in PF care and help identify potential therapeutic targets. Medical centers within the PFF CCN can apply to participate in the PFF Patient Registry.
The Care Center Network currently comprises 21 medical centers in 20 different U.S. states. These centers rely on a collaborative, multidisciplinary approach to offer comprehensive care to patients with PF, and ease access to relevant support services for patients and their families. The CCN is planned to expand into 40 sites by the end of the year.
The PFF offers PF patients some signature programs in person and/or online, which will now be funded by Genentech. These programs included the PFF Support Group Leader Network, the PFF Ambassador program, the PFF Disease Education Webinar Series, and education materials on the disease.