The registry will help researchers better understand pulmonary fibrosis by compiling data on disease progression, patient profiles and efficacy of available treatments. Enrollment is on track to reach 2,000 patients by the end of 2017.
“There are great advances being made in the treatment of multiple types of fibrotic lung disease,” Dr. Kevin Flaherty, steering committee chair of the PFF Patient Registry, said in a press release. “The Patient Registry will serve as a powerful tool in fully understanding how to diagnose, treat and eventually cure pulmonary fibrosis.”
The database is managed through PFF’s Care Center Network (CCN), a group of over 40 medical centers across the nation that use a multidisciplinary and comprehensive approach in PF care.
The registry will let patients being treated at different CCN sites register while receiving care. The registry ensures standard procedures and data integrity controls to include reliable data on demographics, details of each diagnosis and medications, and clinical outcomes. Patients may also donate blood samples for future research — helping to broaden understanding of the progression of PF, and identify which treatments work best and which ones need improvement.
“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 of U.S. medical affairs at Genentech, a partner in this initiative. “We are proud to support this incredibly important initiative to further research and impact the lives of people in the pulmonary fibrosis community.”
The first phase of the PFF Patient Registry will be funded by Genentech, Boehringer Ingelheim, Biogen, InterMune, The Cowlin Family Fund at the Chicago Community Trust, the McQuaid Family Foundation, the Rattner Family Foundation, and the Jenny H. Krauss and Otto F. Krauss Charitable Foundation Trust.
The Chicago-based PFF seeks additional funding sources as it aims to expand the registry to 6,000 patients by 2020.
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