A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. The Office of Rare Diseases Research (ORDR), headquartered in Bethesda, Maryland, was established in 1993Â within the NIH Office of the…
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Therapeutic plasma exchange, which aims to treat systemic sclerosis (SSc) by clearing the blood of antibodies, cytokines and other factors that might promote disease progression, shows potential as a therapy, a review study reported. But a well-designed clinical trial, incorporating equipment and techniques that have come into use since therapeutic…
Increased levels of two proteins produced during acute inflammation can help predict pulmonary involvement in patients with diffuse systemic sclerosis, a study shows. Patients with diffuse systemic sclerosis who also have developed lung disease were found to have significantly higher levels of C-reactive protein (CRP) and serum amyloid A…
Changes in gene expression occur early in scleroderma patients with pulmonary arterial hypertension or interstitial lung disease, which means that a collection of biomarkers can be used to detect these lung conditions early, a study reports. The research dealt with what scientists call a biomarker panel for the conditions. The…
Almost a quarter of systemic sclerosis (SSc) patients with reduced gas exchange develop pulmonary hypertension (PH) within three years, according to a recent study that used right heart catheterization to measure pulmonary arterial pressures. Regular tests to assess PH, including right heart catheterization (RHC), might be useful in…
Severe malnutrition significantly decreases the quality of life of patients with systemic sclerosis (SSc), according to researchers. Standardized nutritional screening is needed to identify those at risk of malnutrition so that interventions are rapidly introduced to avoid disease worsening. The study, “The impact of malnutrition on…
Nailfold capillary damage was found to be a predictor of mortality in scleroderma patients, according to researchers from Australia. The study, “The role of Nailfold Capillary Dropout on Mortality in Systemic Sclerosis,” was published in the Internal Medicine Journal. Microvasculopathy, which refers to the degeneration…
Major healthcare organizations are throwing their support behind an initiative called “Let MI Doctors Decide” intended to improve patient access to prescribed medicines for scleroderma and other autoimmune disorders in Michigan. “Let MI Doctors Decide” is spearheaded by the American Autoimmune Related Diseases Association (AARDA). Organizations joining a new…
Boehringer Ingelheim‘s product nintedanib (marketed as Ofev for the treatment of idiopathic pulmonary fibrosis) has been granted fast track designation by the U.S. Food and Drug Administration for the treatment of systemic sclerosis associated with interstitial lung disease (SSc-ILD). Fast track designation is granted to new therapies that…
Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes that cause at least half of the 7,000 rare diseases currently known — was the focus of a discussion by three top New York geneticists. The Feb. 28 conference,…
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