News

OSIC Opens Large Database to Aid Research Into PF, Other ILDs

A large and multi-ethnic database, reported to be the first of its kind for rare lung diseases, is now compiling real-world clinical and imaging data on people with pulmonary fibrosis (PF) and other interstitial lung diseases (ILDs) from centers across the globe. Launched by the Open Source Imaging Consortium (OSIC),…

New Institute Aims to Leave No Rare Disease Patient Behind

A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…

Group Focuses on Rare Disease Clinical Trial Participation

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…

Inhaled PRS-220 May Be Better Than Into-the-vein Pamrevlumab for IPF

In preclinical studies, PRS-220, Pieris Pharmaceuticals’ experimental inhaled therapy for idiopathic pulmonary fibrosis (IPF), showed stronger lung tissue penetration and anti-scarring effects than pamrevlumab — an into-the-vein, mechanistically similar IPF therapy currently being tested in a Phase 3 clinical trial. These promising findings, which support Pieris’…

BioNews Clinical Will Bring Trials Into ‘Continuum’ of PF Care

A new service, BioNews Clinical is seeking to bring more patients into relevant clinical trials by helping all involved — scientists, pharmaceutical companies, people with diseases — regard these studies as part of continuing care. “Today what happens is that the conversation about patients participating in a clinical trial is…

Patient Groups Team Up to Create First ILD Day on Sept. 15

Aiming to get people at risk for lung disorders more quickly diagnosed and treated, nine patient organizations — including the Pulmonary Fibrosis Foundation (PFF) — are collaborating to present the first Interstitial Lung Disease (ILD) Day, to be held Wednesday, Sept. 15. The goal of the daylong observance is…