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.
A Collaborative Effort
Many groups came together to make this new open-access platform possible. Among them are an 11-member steering committee, a pharmaceutical advisory board, the National Multiple Sclerosis Society, and executives from both CMSC and the North American Research Committee on Multiple Sclerosis (NARCOMS).
There are also plans to include advisers from the U.S. Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention, among others.
Rammohan says he hopes the Internet database will launch in 2015. Once online, it will be updated once a day to keep the information current.
Novartis Pharmaceuticals has made a five-year commitment to fund the project, and Biogen Idec, Genentech, and Teva Pharmaceuticals are also making contributions. In return for funding, these companies will have unfettered access to the NARCRMS database.
How the Database Works
Participating doctors who are members of CMSC will follow a standardized method for collecting and reporting information about their MS patients who opt to be included in the database. The information will include biomarkers, demographic data, imaging test results, and clinical findings. With the data compiled in NARCRMS, participating doctors will be able to do their own smaller studies or collaborate with others to conduct larger studies.
Over time, as data is amassed and NARCRMS grows, its applications will expand as well. For instance, neurologists will have a way to measure and compare treatment options by pulling up data on all patients taking a given therapy who match their patient in age, gender, and disease type. This will arm doctors with substantial real-world data and help them make informed recommendations.
Tracking a wide spectrum of patients as they use one of the 10 FDA-approved disease-modifying drugs for MS will generate safety and effectiveness data that could be even more accurate than the results of clinical drug trials.
If you are interested in participating in the project, contact your neurologist. Participating patients will be able to go online and search the database to see how they compare with other patients. According to Rammohan, patients who want to access NARCRMS data will need to register with and enter the database through NARCOMS.