The Pulmonary Fibrosis Foundations (PFF)’ Patient Registry is providing valuable data to support pulmonary fibrosis research, as evidenced by multiple presentations at the 2019 American Thoracic Society (ATS) conference, held May 17–22 in Dallas, Texas. The PFF Patient registry, launched in 2016, is a comprehensive collection of patient…
Several PFF Registry-based Studies Presented at American Thoracic Society Conference
Patients with idiopathic pulmonary fibrosis (IPF) produce a large amount of abnormal airway immune cells lacking an iron receptor that plays an important role in defending the lungs against pollutants and microbes, a study shows. The missing iron receptor is strongly correlated with poor clinical outcomes for patients, and…
Waiting for my mom, Holly, to receive a life-saving lung transplant has allowed me endless opportunity to explore the dynamics of fear and courage — something you will likely have picked up on if you’ve read any of my previous columns. These feelings have been the driving forces…
An international group of experts and advocates in idiopathic pulmonary fibrosis (IPF) and other interstitial lung diseases (ILDs) have joined to create the Open Source Imaging Consortium (OSIC), a not-for-profit effort to advance the diagnosis of these illnesses with the help of digital imaging and machine learning. According…
Sadly, many patients living with a life-threatening illness are likely familiar with a magnitude of feelings, fears, and emotions. There is no instruction manual on how to navigate life-threatening with a lung disease like idiopathic pulmonary fibrosis (IPF). I’ll never forget when doctors told me that due to my…
As an ex-college football player, I get goosebumps over the sweet smell of freshly cut grass in the fall — a sign that football season is upon us. It’s too bad that it puts me at risk for a potentially deadly disease: aspergillosis. Aspergillosis is a fungal disease caused…
The first patient was dosed in a Phase 2b clinical trial investigating the safety and effectiveness of Respivant Biosciences’ inhalation therapy candidate RVT-1601 for idiopathic pulmonary fibrosis patients with persistent cough. Respivant Biosciences also has launched a new website — IPFcough.com — to increase awareness about the effects of cough…
An idiopathic pulmonary fibrosis (IPF) treatment candidate that mimics a tiny RNA molecule lowered the production of key profibrotic proteins and blocked fibrosis development in a mouse model of the disease. The data was presented recently at the 2019 American Thoracic Society (ATS) Conference in Dallas, in a poster titled “…
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…
In January 2018, I lost my cousin to lung cancer. It was at stage 4 by the time he was diagnosed, and his decline was rapid and unexpected. One day, he was fine, and the next, he was gone. I had never lost someone so close to me, and it…
