The Pulmonary Fibrosis Foundation (PFF) and Veracyte, Inc have recently announced they are partnering on a survey for United States patients in order to develop better insights concerning patients’ diagnostic experiences with interstitial lung diseases (ILDs) and, specifically idiopathic pulmonary fibrosis (IPF). The Interstitial Lung Disease Patient Journey (INTENSITY) survey will evaluate the time and respective steps required for patients to obtain a diagnosis, specific obstacles that get in the way of a timely diagnosis, and both the emotional and physical impact of patients’ diagnostic journey.
Gregory P. Cosgrove, the PFF’s chief medical officer, said: “IPF and other ILDs are notoriously difficult to diagnose, leading to treatment delays, added healthcare costs and significant emotional impact for patients and caregivers. Results from the INTENSITY survey will help us more fully understand patients’ diagnostic experiences so that we can further our efforts among all stakeholders to improve timely diagnosis and treatment of this disease. This ability is more critical than ever, given the recent availability of treatments that can slow progression of IPF.”
David Lederer, medical advisor of PFF developed the INTENSITY survey to work online, and it is being conducted by an independent healthcare research organization, Outcomes Insights, thanks to Veracyte’s funding support. The results will be announced later this year.
“We are delighted to be partnering with the Pulmonary Fibrosis Foundation, the leading pulmonary fibrosis information resource and support network in the United States, on this important survey. This effort demonstrates our commitment to address the significant needs of ILD and IPF patients,” explained Bonnie Anderson, the CEO and President of Veracyte.
Idiopathic pulmonary fibrosis (IPF) is a disease in which the tissue in the lungs becomes thickened, scarred and stiff over time. This increase of the scar tissue leads to a condition known as fibrosis, and as it becomes progressively worse, the lungs lose their capacity to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t receive enough oxygen. In some cases, doctors can determine the cause of the fibrosis, but in many cases, there is no known cause. When the cause of fibrosis remains unclear but specific radiographic or pathologic criteria are met, the disease is called idiopathic pulmonary fibrosis (IPF) to which there is currently no cure. There are two FDA-approved for IPF in the US — Ofev and Esbriet.