Newswise — To mark Clinical Trials Day on May 20, the Pulmonary Fibrosis Foundation (PFF) aims to herald the positive impact clinical trials have made on the pulmonary fibrosis (PF) community, the current advancements in PF research and the importance of patient involvement.                           

“Pulmonary fibrosis encompasses a group of conditions with a significant symptom burden, and clinical trials play a central role in leading to additional treatments for patients who urgently need them,” said Dr. Joyce S. Lee, PFF senior medical advisor for research and health care quality. “Data generated from clinical trials is critical to accelerating disease research and providing a better understanding of the complexity of these diseases and its variable course.”

Patient Involvement

The most important aspect of clinical trials is patient involvement. With active patient participation and collaboration with various funding agencies and investigators, the PF community will continue its efforts in improving the lives of the tens of thousands of patients living with this devastating disease.

“We encourage patients to actively participate in clinical trials, which will allow them to have a voice in their care process, improve patient outcomes and help find a cure,” added Dr. Lee.

For patients who don’t have access to clinical trials at their primary physician’s office, there are other ways to find them. To connect patients, the PFF developed a Clinical Trials Education Center, which features a Clinical Trial Finder tool and Drug Development Pipeline, where patients can learn about the latest in drug development for PF-related conditions. The Foundation also recently launched a new Clinical Trials newsletter so patients can stay up to date on enrolling trials. In addition, the PFF Registry allows patients to participate in a very positive way to help accelerate research efforts.

Active Trials in the PF Space

In 2014, the FDA approved two medications for treating IPF: nintedanib and pirfenidone – a huge success for the community. This year also holds much promise, as the research community aggressively investigates new therapeutics for all forms of PF. With studies currently in various stages of development, there are a variety of clinical trials that are actively recruiting patients.

For example, enrollment is now underway for PRECISIONS, an NIH-supported study which is looking at genetic risk factors and responses to therapy, applying the principles of precision medicine to the treatment of IPF patients. The trial will enroll 200 patients from approximately 20 PFF Care Center Network (CCN) sites. Other active trials now recruiting include:

  • STARSCAPE Phase 3: Clinical study of Recombinant Human Pentraxin-2 (PRM-151) in patients with IPF
  • REBUILD Phase 3: Clinical study of Pulsed Inhaled Nitric Oxide (INOpulse) in patients with PF and pulmonary hypertension
  • ZEPHYRUS Phase 3: Clinical study of pamrevlumab in patients with IPF

“While we’ve learned a tremendous amount about pulmonary fibrosis in the last several decades, more needs to be done,” concluded Dr. Lee. “We don’t have curative therapies for these diseases. And in order to do that, we need patients to participate in promising clinical trials to change the landscape of pulmonary fibrosis treatment in the future.”

To learn more about PF clinical trials, please visit https://www.pulmonaryfibrosis.org/life-with-pf/clinical-trials and tune into this video here. For more info about PF, please visit www.AboutPF.org.

About the Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. The PFF has a four-star rating from Charity Navigator and is a Better Business Bureau and National Health Council accredited charity. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the U.S.

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