A new database initiative will let doctors, researchers, and patients see real-time, real-world data about MS.
A new open-source database for multiple sclerosis (MS) research known as the North American Registry for Care and Research in Multiple Sclerosis, or NARCRMS, will soon be launched. Scientists, doctors, and pharmaceutical companies will be able to use the database to learn more about MS by tracking patients’ disease course, comparing therapeutic outcomes, and identifying new MS biomarkers.
The initiative was announced during a keynote speech by Dr. Kottil Rammohan at this year’s annual meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee for Treatment and Research in Multiple Sclerosis.
A Model of Success
NARCRMS will be modeled after the overwhelmingly successful database project known as the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a long-term observational study launched in 2005 to follow both healthy subjects and people diagnosed with Alzheimer’s disease (AD). AD affects nearly 50 percent of all people over the age of 85, and it is the sixth leading cause of death in the U.S.
According to the ADNI website, the initiative “maintains an unprecedented data access policy intended to encourage new investigation and to increase the pace of discovery in the race to prevent, treat, and one day cure AD. All data is made available without embargo.”
The ADNI study is currently tracking 1,000 patients at 57 study sites in the U.S. and Canada. Researchers are compiling data from patient visits into an open-access database shared without restrictions, in order to advance the understanding of AD and find effective treatments. The NARCRMS database will be open-access, just like ADNI.
By collecting anonymous data on a cross-section of MS patients, patterns may emerge that reveal common lifestyle habits, genes, or environmental factors that had eluded scientists until now.
“We will amass a vast amount of information, and that will really change the way we think when we see an individual patient,” explained Rammohan, a professor of clinical neurology, director of the MS Center of Excellence, and chief of the Multiple Sclerosis Division at the University of Miami’s Miller School of Medicine, in a press release.
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