Boehringer, Duke collaborate on IPF patient registry
Boehringer Ingelheim Pharmaceuticals and the Duke Clinical Research Institute (DCRI) have announced the expansion of the Idiopathic Pulmonary Fibrosis—PROspective Outcomes (IPF-PRO) Registry, a patient registry developed to uncover insights into IPF, a rare and serious lung disease. The expansion will increase the study enrollment from 300 patients at 18 study sites to 1,500 patients at approximately 45 sites, creating the largest registry of newly diagnosed IPF patients.
The IPF-PRO Registry, which was launched in June 2014, was the first multicenter longitudinal disease state registry in the U.S. focused specifically on IPF. Boehringer Ingelheim and the DCRI have agreed to expand the IPF-PRO Registry based on the quality of the data and insights obtained from the first 300 patients enrolled in the registry and the growing scientific need for diverse, real-world data to understand IPF disease progression, disease history, patient-reported outcomes and disease biomarkers.
"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," said Scott Palmer, M.D., director of Pulmonary Research at the DCRI. "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."
One element of the IPF-PRO Registry is a bio-repository that stores blood samples that provide patient genetic material that may help to better understand the relationship of various biomarkers to patient outcomes. The Registry expansion will substantially increase the size of the bio-repository, creating additional opportunities for future translational research and the identification of novel biomarkers that may be predictive of disease outcomes or individual patient treatment responses.
"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 Craig Conoscenti, M.D., principal expert, Clinical Development and Medical Affairs and Interstitial Lung Disease Program Lead, at Boehringer Ingelheim Pharmaceuticals. "We are proud to continue our collaborative partnership with the Duke Clinical Research Institute, as we bring our unique strengths and expertise together in working toward improving the lives of those living with IPF."
The centers that have been part of this successful registry to date include:
- Cleveland Clinic, Dr. Daniel Culver
- Duke University, Dr. Lake Morrison
- Medical University of South Carolina, Dr. Timothy Whelan
- National Jewish Health, Dr. Tristan Huie
- Stanford University, Dr. Paul Mohabir
- Temple University, Dr. Francis Cordova
- Tulane University, Dr. Joseph Lasky
- University of Alabama-Birmingham, Dr. Joao de Andrade
- University of California-Los Angeles, Dr. John Belperio
- University of Chicago, Dr. Imre Noth
- University of Louisville, Dr. Jesse Roman
- University of Michigan, Dr Kevin Flaherty
- University of Minnesota, Dr. Hyun Kim
- University of Texas Southwestern Medical Center, Dr. John Fitzgerald
- Vanderbilt University, Dr. Lisa Lancaster
- Weill Cornell Medical College
- Yale University, Dr. Mridu Gulati
IPF is a rare and serious lung disease that causes permanent scarring of the lungs. It affects as many as 132,000 Americans, typically men over the age of 65. Early diagnosis and proper care are critical to helping people treat their condition.