The Pulmonology Advisor interviewed experts to learn about how the Pulmonary Fibrosis Foundation’s PFF Care Center Network can advance research.
What prompted the creation of the PFF Care Center Network, and why was there a need for such a system?
Kevin R. Flaherty, MD, MS: PF is a complex disease, and diagnosis and treatment can be challenging as the symptoms — eg, shortness of breath, fatigue, and dry, persistent cough — can be common in other illnesses. Therefore, patients often experience a misdiagnosis in the early stages, leading to a significant delay in an accurate diagnosis. Following a diagnosis of PF, patients typically have very little understanding of the disease.
We created the CCN so that people living with PF can find experienced medical professionals who understand their disease and can provide comprehensive, high-quality care. From clinical staff to pathologists and radiologists, each site provides access to a multidisciplinary team of experts who are experienced in diagnosing and treating PF.
Sonye Danoff, MD, PhD: To add to that, the CCN provides an infrastructure that facilitates research on PF and accelerates the development of clinical trials. An important part of that research is the PFF Patient Registry, a database of patients with PF who have agreed to share detailed medical information for use in this research.