News

Pulmonary Hypertension in SSc Patients Found to Shorten Survival

Having pulmonary hypertension shortens survival in people with scleroderma, also called systemic sclerosis (SSc), according to a Brazilian study that followed patients for up to three years and used a computer algorithm to analyze the results. Specifically, this lower survival rate in SSc patients with pulmonary hypertension was…

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…

Hormones, Signaling Proteins in SSc Altered With BMI, Analysis Finds

Altered levels of immune signaling proteins (cytokines) and fat-based hormones in systemic sclerosis (SSc) are associated with changes in body mass, a blood analysis determined. Researchers say their findings suggest that “an abnormal twist … takes place in SSc” between the immune signaling proteins, these hormones, and body mass index or BMI,…

Pitt Study Testing COVID-19 Vaccines in Autoimmune Diseases

A new study being conducted at the University of Pittsburgh is testing the safety and effectiveness of COVID-19 vaccines in people with scleroderma and other autoimmune diseases. The CoVER study seeks to enroll adults, 18 or older, who have rheumatoid arthritis, Sjogren’s syndrome, myositis, or…

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…

Paquinimod, Possible Scleroderma Therapy, Shows Promise in Small Trial

Eight weeks of treatment with a small molecule called paquinimod significantly reduced the number of myofibroblasts — cells that drive scarring — in people with scleroderma, a small clinical trial reported. Findings also suggested that paquinimod may lessen type I interferon (IFN) activity, a relevant scleroderma biomarker, and appeared…