PFF Patient Registry Update

April 07, 2016
On behalf of the Pulmonary Fibrosis Foundation (PFF), Pulmonary Fibrosis Partners is excited to announce that in March, the first patient was enrolled into the PFF Patient Registry. This is a major milestone on the way to enrolling up to 2,000 people with pulmonary fibrosis (PF) into the PFF Patient Registry, resulting in the largest and most collaborative research endeavor our community has ever seen. Over the next several years, patients will be enrolled into the PFF Patient Registry through the PFF Care Center Network of 40 sites in 27 states. The PFF Patient Registry will permit researchers, through the generous contribution of medical data by patients, to gain a better understanding of how different forms of PF progress, who is affected by PF and how patients respond to different treatments. Data from the PFF Patient Registry will help inform best practices in care and identify potential treatment targets. In addition to providing critical information to guide PF research, the PFF Patient Registry will also serve as a catalyst, creating a potential pool of patients who are available to participate in clinical trials. The PFF Patient Registry has the potential to impact each and every member of the pulmonary fibrosis community. With the first patient in the PFF Patient Registry, we are making a special request of you to take action to ensure the long-term success of this important project. Please lend your support in one of the following ways: Join PFF on April 13, 2016 at 11:00 a.m. CT for the Update on Research in Pulmonary Fibrosis and the PFF Patient Registry and Care Center Network webinar hosted by the PFF Medical Team. This webinar directly addresses the different ways that the PF community and the PFF are working to discover the causes of PF and find new treatments. Hear both the medical and patient perspectives on the future of research in PF. Register and submit questions here:…/5629082093410746625 To learn more about the PFF Care Center Network and PFF Patient Registry, please call the PFF Patient Communication Center at 844.TalkPFF (844.825.5733) or email [email protected]. To donate today, visit