Pulmonary Fibrosis Foundation Launches National Registry For Pulmonary Fibrosis Patients, Enrolls First Patient

The Pulmonary Fibrosis Foundation (PFF), the leading pulmonary fibrosis (PF) resource for patients, their families as well as for the medical community, announced the launch of the PFF Patient Registry, the Foundation’s first comprehensive collection of data from pulmonary fibrosis patients across the country, with the first patient enrolling last week. Patient enrollment takes place at participating PFF Care Center Network (CCN) sites, a national network of 40 sites in 27 states across the country.
According to the news:

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. Patients participating in the PFF Patient Registry will do so through their regularly scheduled medical appointments. The Registry includes a biorepository, where patients can elect to also donate blood samples. Data from the Registry will help inform best practices in care and identify potential treatment targets. The Registry will also create a potential pool of patients who are available to participate in clinical trials.

Patti Tuomey, EdD, president and chief executive officer of the PFF stated:

The PFF Patient Registry is an important research tool that will help us unlock the mysteries of this devastating and fatal disease. People with nearly all types of PF will be able to participate, and in a secure, confidential manner. The Foundation is so grateful to the medical teams at the PFF Care Center Network sites who are enrolling patients, and especially to patients who are participating and all of the families, friends and donors who are endorsing this Registry.

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