registry

Exposure to disease-modifying therapies does not increase multiple sclerosis (MS) patients’ risk of developing a severe form of COVID-19, according to a registry-based study. However, MS patients who are older, obese, or have severe neurological impairments have a greater risk of developing a severe form of the disease. Findings…

Acthar Gel (repository corticotropin injection) eased flare-up symptoms in patients with multiple sclerosis (MS) experiencing relapses, top-line data from an observational registry study shows. Acthar Gel, a medication developed and marketed by Mallinckrodt Pharmaceuticals, is a compound that enhances the production of steroids in the…

The relative risk of developing cancer was found to be higher in multiple sclerosis (MS) patients who more frequently switched between disease-modifying treatments, according to a study. In addition, researchers found an increased incidence of cancer in male MS patients from 20 to 50 years old, and in female…

Corrona has expanded its collaborative multiple sclerosis (MS) U.S. patient registry to include Genentech, the first pharmaceutical company to participate. Established in 2017, the Corrona MS Registry is a real-world U.S.-based registry, developed in collaboration with the National MS Society. Its goal is to help guide treatment decisions based on…

The Lambert Center for the Study of Medicinal Cannabis and Hemp  has launched mmj.org, an initiative to advance the scientific community’s understanding of medical marijuana and its derivatives through the creation of a comprehensive national patient registry. The Thomas Jefferson University center registry aims to enroll  100,000 medical marijuana patients…

CannaMD plans two medical marijuana clinics in the Orlando area to evaluate patients for entry in the Florida Medical Marijuana Use Registry. The first clinic opened Jan. 17 in the suburb of Dr. Phillips; the second will open Jan. 25 in the Lake County town of Mt. Dora. CannaMD is a statewide…

The National Multiple Sclerosis Society has endorsed the North American Registry for Care and Research in Multiple Sclerosis, a collaborative effort involving other multiple sclerosis registries, clinicians, researchers and patients in the U.S. and parts of Canada. NARCRMS is a public-private partnership, bringing together academia, industry, governmental agencies, and nonprofit organizations with an interest in MS. It operates under the auspices of the Consortium of Multiple Sclerosis Centers. It consists of a database of clinical records and patient-centered outcomes, providing clinicians and scientists with a greater and more integrated ability to track the incidence, prevalence and course of MS. Like many registries, NARCRMS includes data collected by physicians, like neuroimaging scans, genetic markers, cognitive assessments and specimen collection, and testing for identification of biomarkers of disease progression. It also adds patient-reported outcomes focused on disease challenges and impacts on daily life. Its goal is to improve the understanding of MS, facilitate multi-level care, and aid in recruiting patients into clinical trials. NARCRMS is the first open-source database to connect MS centers across North America to regional databases by state, region and zip code. To date, NARCRMS has recruited 10 centers, with another three in the process of coming aboard, and has enrolled 113 patients. The registry builds on North American Research Committee on Multiple Sclerosis (NARCOMS), the oldest patient-driven registry in the U.S. using patient experiences to advance MS clinical care and life quality. NARCOMS was created in 1993 by the CMSC. More than 37,500 people had joined the registry as of 2015. Researchers used NARCOMS data on 2014 to report on outcomes in switching treatments, therapy effectiveness, disease progression, co-existing conditions, and other topics that help understand the MS experience.

The National Multiple Sclerosis Society (NMSS) has officially announced its collaboration with Corrona on the launch of the Corrona Multiple Sclerosis Registry to compare the safety and effectiveness of approved therapies in multiple sclerosis (MS). Corrona, based in Cambridge, Massachusetts, conducts observational cohort studies, offering analytic expertise…