Pulmonary Fibrosis Update

U-M’s Kevin Flaherty to lead national IPF care network and registry

Kevin R. Flaherty, M.D., M.S., medical director of the U-M Interstitial Lung Disease Program, has been appointed chairman of the steering committee of the Pulmonary Fibrosis Foundation (PFF) Care Center Network (CCN) and Patient Registry, a national collaborative formed to improve the understanding and treatment of interstitial lung diseases.

Kevin R. Flaherty, M.D., M.S.
Kevin Flaherty, M.D., M.S.

Michigan is one of nine elite treatment centers that currently make up the CCN. Together they are working to provide comprehensive, multidisciplinary patient care. Although each site has individual experience in treating lung fibrosis, the network’s strength comes from the ability of sites to share ideas, advance research and determine best practices. The goal is to bring more centers into the network in the near future so that their progress will benefit many more patients. 

The PFF Patient Registry is collecting information from patients with a range of fibrotic pulmonary disorders whose care is not determined by a clinical study protocol. This will make it possible for investigators to study the distribution of disease types, and how diseases behave within different demographic and geographic groups, to help determine best practice patterns. The registry also collects patient-reported outcomes and includes a centralized biorepository, a resource for investigators studying the pathobiology of lung fibrosis, identifying prognostic markers and developing potential therapies.

Because the network is organized and supported by the Pulmonary Fibrosis Foundation, there is hope that a broad coalition of stakeholders will participate, speeding the development of promising therapies. Dr. Flaherty’s role as the chairman of the steering committee is to encourage collaboration and help move promising projects forward.  Patients and families stand to benefit from the network in numerous ways, including greater access to the expert medical care and support services necessary to manage these complex conditions, and up-to-date information on the latest advances and clinical trials.

To learn more about the network and the registry, visit www.pulmonaryfibrosis.org.