Alliance Aims to Expand IPF Patient Registry, Creating Nation’s Largest Data Source


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IPF-PRO registry expansion

The Duke Clinical Research Institute (DCRI) and Boehringer Ingelheim Pharmaceuticals are expanding the Idiopathic Pulmonary Fibrosis – PROspective Outcomes (IPF-PRO) Registry, an academic-industry alliance between the two to better understand outcomes and disease progression in people with idiopathic pulmonary fibrosis (IPF), a rare lung disease.

The expansion will increase the five-year registry from 300 IPF patients diagnosed at 18 lung disease centers to 1,500 patients at about approximately 45 sites around the country, making it the largest registry of patients with a diagnosis of IPF.

The registry, launched in June 2014, was the first multicenter longitudinal disease state registry in the U.S. dedicated to IPF. It aims to collect data on the strategies used to diagnose IPF, along with the treatment and management efforts applied throughout study follow-up, clinical outcome events, and patient-reported outcome data. Blood samples are collected periodically throughout the study for use in future research efforts.

“Expanding the IPF-PRO Registry is important to the IPF community because it will substantially advance the understanding of this rare and fatal lung disease,” Dr. Scott Palmer, MD, director of Pulmonary Research at the DCRI, said in a press release. “In collecting data from a larger, more diverse group of patients from multiple centers nationwide – all of whom are newly diagnosed with IPF – this registry will allow us to better assess the impact of the disease over time on clinical and patient-centered outcomes.”

The IPF-PRO Registry is a bio-repository that stores blood samples, thus providing genetic material from IPF patients with the aim to better understand the association of various IPF biomarkers to patient outcomes.

With the expansion, the size of the bio-repository will increase substantially, providing additional opportunities for future translational research and for the identification of new IPF biomarkers that may predict disease outcomes or patients’ response to treatments.

“The IPF-PRO Registry, which represents a valuable academic-industry partnership, is a substantial and important opportunity for Boehringer Ingelheim to contribute to the advancement of our understanding of IPF – independent of any particular medication or drug discovery effort,” said Dr. Craig Conoscenti, MD, principal expert of Clinical Development and Medical Affairs and lead of the interstitial lung disease program at Boehringer Ingelheim.

Conoscenti said the pharmaceutical company is proud to continue the alliance with Duke Clinical Research Institute “as we bring our unique strengths and expertise together in working toward improving the lives of those living with IPF.”

IPF is a chronic disease of unknown cause characterized by a progressive decline in lung function. It develops mainly in older adults, is limited to the lungs, and is associated with the histopathologic and/or radiologic pattern of usual interstitial pneumonia (UIP). The clinical symptoms of the disease are nonspecific and can be shared with many pulmonary and cardiac diseases.