The Pulmonary Fibrosis Foundation is expanding its Patient Care Network and Patient Registry, which it formed in late 2013 to improve the quality of life for patients with all types of pulmonary fibrosis, including idiopathic pulmonary fibrosis (IPF).
In May, the PFF began accepting applications to expand the Patient Care Network, which is expected to reach 40 sites by the end of 2015.
Pilot sites for the PFF Care Center Network and Patient Registry include: the University of California, San Francisco; the University of Chicago; the University of Louisville; the University of Michigan; National Jewish Health; University of Pittsburgh; Vanderbilt University; University of Washington and Yale University. The sites were selected because of their demonstrated commitment to PF patient care and research and were closely involved in the 2-year planning process to establish the scope, standards, and protocols for the project, according to the PFF.
Eventually, the PFF Patient Registry will be the largest database of PF patient records with the furthest demographic reach, according to the PFF. “It will provide data essential for improving the understanding of the epidemiology, incidence, prevalence, natural history, and other clinical characteristics of PF, according to a PFF statement.
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