The Pulmonary Fibrosis Foundation (PFF) just hit its enrollment goal for the initial phase of the PFF Patient Registry with participation of 2,001 patients. The Registry, launched in 2016, is a collection of comprehensive anonymized data from patients living with pulmonary fibrosis (PF), a group of fatal lung diseases which cause progressive scarring in the lungs.
The PFF is inviting investigators to submit proposals to access the data to better understand the causes of PF, improve the way doctors diagnose and care for people living with PF, and discover new treatments.
Registry data will help inform best practices in care and identify potential treatment targets. The Registry will also speed the path to clinical trials by creating a pool of patients who are interested in participating.
Patients participating in the Registry have enrolled through the PFF’s nationwide Care Center Network sites and are monitored through their regularly scheduled medical appointments. The Registry includes information about the patient’s age and gender, details on how the diagnosis was made, test results, medications, and medical outcomes. It also includes high resolution CT scans and a biorepository of patient blood samples.
The PFF accepts and reviews ancillary research proposals three times a year. Details are available at pffpatientregistry.org.
Over time and with additional funding, the PFF aims to enroll additional patients and expand the sources of data gathered for the Registry.
In addition to Genentech, a member of the Roche Group, the first phase of the PFF Patient Registry was funded through the support of corporations, foundations, and individuals who have been impacted by PF. Each of these donors shares in the belief that a comprehensive registry is fundamentally important to improving the lives of those living with the disease.
Author: Michael Causey