The Pulmonary Fibrosis Foundation (PFF) is partnering with Veracyte, Inc. to conduct a patient survey across the United States in an attempt to better understand their diagnostic experiences with interstitial lung diseases (ILDs), including idiopathic pulmonary fibrosis (IPF). The Interstitial Lung Disease Patient Journey (INTENSITY) survey will examine the steps and amount of time required for these patients to receive a diagnosis, what obstacles there are to them receiving a timely diagnosis, and the whole diagnostic process’ physical and emotional impact on the patients.
“IPF and other ILDs are notoriously difficult to diagnose, leading to treatment delays, added healthcare costs and significant emotional impact for patients and caregivers,” said Gregory P. Cosgrove, MD, chief medical officer of the PFF. “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.”
The PFF’s senior medical advisor on education and awareness, Dr. David Lederer, led the development of the INTENSITY survey. It is already underway online, currently being managed by independent healthcare research organization Outcomes Insights, and thanks to funding from Veracyte, a pioneer in the field of molecular cytology, offering genomic solutions that resolve diagnostic ambiguity and enable physicians to make more informed treatment decisions at an early stage in patient care. The survey’s findings are expected in a report later in the 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,” said Bonnie Anderson, Veracyte’s president and chief executive officer. “This effort demonstrates our commitment to address the significant needs of ILD and IPF patients.”
Pharmaxis Ltd. and Synairgen plc are entering into a research collaboration to develop a therapeutic for idiopathic pulmonary fibrosis (IPF). The two companies are researching a selective inhibitor of the lysyl oxidase type 2 enzyme (LOXL2), an enzyme shown to promote scar tissue and damage in the lungs of IPF patients.