IPF-PRO Registry Trial Reveals Delayed Diagnosis in Enrolled IPF Patients

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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IPF-PRO Registry studying diagnosis and treatment

Boehringer Ingelheim Pharmaceuticals, Inc., recently announced data on the first 49 patients participating in the IPF-PRO (Idiopathic Pulmonary Fibrosis – PROspective Outcomes) Registry, better characterizing the features of patients with IPF when they are diagnosed with the disease. The data was presented at the American College of Chest Physicians Annual Meeting (CHEST 2015), held Oct. 24-28 in Montreal, Canada.

The IPF-PRO Registry is based on an academic-industry collaboration between the Duke Clinical Research Institute (DRCI) and Boehringer Ingelheim Pharmaceuticals, Inc. The goal of the project is to better understand the clinical outcome, therapeutic approaches and disease progression in patients with IPF. The impact of the disease on the patient’s quality of life is also assessed. The IPF-PRO is a five-year registry and includes a biomarker bank so that potential blood or genetic markers of IPF can be identified and linked to patient outcomes.

“We are very excited to share this first look at real-world patients with IPF across 18 IPF academic centers in the United States. Over time, we look forward to helping the IPF community learn more about disease progression, quality of life and other outcomes that are important to patients,” said the study’s lead author, Dr. Michael Durheim, Medical Instructor, Department of Medicine at Duke Clinical Research Institute, in a news release. “As this alliance continues, our objective is to advance the understanding of this devastating disease, through additional findings about diagnosis, treatment patterns and whether blood or genetic markers may impact patient outcomes.”

At CHEST 2015, researchers revealed that most of the patients enrolled in the trial so far exhibited IPF-related symptoms for more than a year before being properly diagnosed and many were found to already have a considerably impaired lung function at the time of IPF-PRO enrollment. The team reported that 29% (14 patients) needed supplemental oxygen while resting, and 45% (22 patients) needed supplemental oxygen during activities. In terms of comorbidities, researchers found that the most commonly reported were gastroesophageal reflux disease (in 69% of the patients), coronary artery disease (31%), and sleep apnea (29%).

“These results showed us that many patients already have significant respiratory impairment by the time they are diagnosed by a pulmonologist, which reinforces what we know from ongoing research,” noted Dr. Danny McBryan, vice president, Clinical Development and Medical Affairs, Respiratory, Boehringer Ingelheim Pharmaceuticals. “The Registry emphasizes the critical need to recognize IPF earlier and send patients to a specialist faster to determine diagnosis and care.”

The IPF-PRO is currently recruiting participants at 18 centers with expertise on lung disease treatment. The aim is to recruit a total 300 IPF patients. If you would like to obtain more information on the clinical trial, please click here.