The Pulmonary Fibrosis Foundation (PFF) enrolled the first patient in its new PFF Patient Registry, the foundation’s inaugural research tool that will comprise a broad collection of data from PF patients nationwide. Patients can enroll at any of the participating 40 PFF Care Center Network (CCN) sites in 27 states.
The Pulmonary Fibrosis Foundation is the leading provider of PF resources for patients, their families, and the medical PF community.
Established in 2013, the CCN includes medical centers across the nation that use a multidisciplinary, collaborative approach to provide PF patients with the best possible comprehensive care, while offering their families with much-needed access to support services.
The PFF Patient Registry includes a biorepository that will allow patients to donate blood samples. Data from the program will help healthcare providers with information regarding best practices and identify eventual treatment targets. The Patient Registry will also establish a pool of patients who are potentially available to participate in future clinical trials. Researchers will be able to access additional data, CT images, and biosamples provided by the patients to learn more about the causes of PF, methods to improve diagnoses, and improve treatment administration.
“Information collected through the PFF Patient Registry will help facilitate ongoing research necessary to better understand how we can help people living with multiple types of pulmonary fibrosis, including other diseases that often include PF, such as rheumatoid-arthritis associated pulmonary fibrosis,” said Kevin Flaherty, M.D., MS, Steering Committee Chairman of PFF’s Care Center Network and Patient Registry, in a press release. “This project provides an incredible opportunity to advance progress toward a cure for pulmonary fibrosis.”
The PFF Patient Registry program will allow researchers to access medical data that patients have agreed to contribute to gain an increased understanding of how different forms of PF progress, who is mostly affected by PF, and how patients respond to the available treatments. Patients who agree to participate in the program can do so through their regular scheduled office visits.
The PFF will host a webinar from 11 a.m. to noon Central Time on April 13 called “Update on Research in Pulmonary Fibrosis and the PFF Patient Registry and the PFF Care Center Network.” It will address the different ways the PFF and the PF community are working to find the causes of the disease, and discuss new treatment options. Flaherty will be among the webinar speakers. To register and submit questions for discussion, please visit this link.
“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,” said Patti Tuomey, Ed.D., PFF’s president and CEO. “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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