Prior to the launch of FSR's webinar on pulmonary sarcoidosis, Mary McGowan, CEO, discusses the private listening session held with the FDA that addressed the critical needs in the field.
The Foundation of Sarcoidosis Research (FSR) will be hosting a webinar tomorrow, August 3 at 5pm ET, to expand on a recent listening session on pulmonary sarcoidosis that the foundation conducted with the US Food and Drug Administration (FDA). In the non-regulatory, non-public session, challenges of sarcoidosis were shared by patients and caregivers impacted by the disease.
Sarcoidosis is a rare disease that affects various areas of the body including the lungs, lymph nodes, eyes, and skin, simultaneously at times. The development of granulomas in these organs lead to multiple complications that individuals with the condition must live with, and while there have been many advances in research, treatment and diagnosis can be difficult.
In an interview with HCPLive, Mary McGowan, CEO of the Foundation for Sarcoidosis Research, detailed the premise and the primary takeaways from the listening session, where speakers explained to the FDA the critical need for more flexibility in clinical trials and approval pathways, as well as the urgency for more drug development.
"It is commonly misdiagnosed," McGowan explained. "Sarcoidosis is extremely challenging to diagnose. In fact, sarcoidosis is a diagnosis of exclusion, which means that clinicians must effectively rule out any other conditions before providing a clear diagnosis for sarcoidosis."
It can take months, or even years, before a patient finally receives a diagnosis of the disease. McGowan shared that patients may even undergo serious treatments for inaccurate diagnoses, such as advanced cancer treatment, before their ultimate diagnosis of sarcoidosis.
As a progressive disease, time spent without proper treatment can greatly impact the outcome of each patient, in addition to their quality of life.
"Pulmonary sarcoidosis, the topic of this particular patient listening session, can also often be misdiagnosed as asthma and even COPD," she continued. "Delayed diagnosis, of course, not only means that patients can be exposed to harmful therapies that will not improve their condition, but time lost is also lung function lost, and this can't be rebuilt."
To learn more about the listening session on pulmonary sarcoidosis, read the summary white paper.