PFF Insights

What’s Going on with PF Research?

by Dr. Amy Hajari Case, Senior Medical Advisor for Education and Awareness
July 10, 2021
As the COVID-19 pandemic unfolded early in 2020, medical centers around the country and the world began to limit non-emergency services, including routine clinic visits, screening exams, and elective procedures. This was at a time when the personal protective equipment (PPE), such as masks and eye protection, were in limited supply and the only truly “safe” place was in one’s own home. 

At this same time, clinical research trials in pulmonary fibrosis that had been in progress or just getting underway were stopped along with everything else. There were many reasons for this, ranging from concerns over safety of patients and staff, limits to testing capacity including pulmonary function tests, and research physicians and staff being moved to care for hospitalized patients. In a 2020 survey of PFF Care Center Network sites, 75% of centers stopped research activities entirely, and 94% reported halting recruitment and screening of patients for new clinical trials.

That’s not to say progress stopped entirely. Research sites were able to use telemedicine, home health, and local labs to collect safety data for patients already on studies. Additionally, based on previously completed clinical trials, the FDA approved new indications for nintedanib, treprostinil, and tocilizumab during the pandemic. 

While the pandemic isn’t over, we’ve come a long way from the early days with better testing, strategies to reduce viral transmission, and vaccines. Now, more and more clinical trials for PF are resuming recruitment or are newly open for enrollment. For example, the PRECISIONS trial, the first study in personalized medicine in IPF, successfully launched in January, and the PFF Community Registry will be open for enrollment later this year.

Clinical trials are essential to learning more about PF and developing new therapies. While they aren't intended to provide individual benefits to patients, people living with PF may feel empowered by participating in research that could help other PF patients in the future. If you’ve been thinking about taking part in a clinical trial for pulmonary fibrosis, now is a great time with lots of opportunities to participate. You might still be nervous about aspects of in-person care, but know that clinical trial centers continue to take many precautions to ensure your safety, including mask wearing for all individuals, vaccines for staff and patients, and in some circumstances, pre-procedure testing for COVID-19. As in all aspects of research, the safety and well-being of patients is always the top priority. 

If you want to learn more about PF research and participating in clinical trials, check out our Clinical Trials Education Center on our (new!) website! There, you can read more about trials that are currently recruiting participants and even find the research site closest to you.