DALLAS — Multiple sclerosis (MS) experts are planning to launch a new national database along the lines of the tremendously successful Alzheimer's Disease Neuroimaging Initiative (ADNI).
With funding from the pharmaceutical industry, the North American Registry for Care and Research in MS (NARCRMS) will be an open-source database with information available to clinicians, patients, and pharmaceutical companies.
The "totally novel" database promises to provide "a vast amount of information" that will "transform care and transform research," giving clinicians a much broader understanding of the disease, said Kottil W. Rammohan, MD, professor, clinical neurology, University of Miami, Florida, during a lecture here at the 6th Cooperative Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee for Treatment and Research In Multiple Sclerosis (ACTRIMS).
In return for providing funding, pharmaceutical companies will have access to information updated daily in real time that will "help define better drugs," said Dr. Rammohan.
The new database will be connected to a patient-reported database called NARCOMS, which includes 30,000 patients.
The ADNI database, which collects imaging and biomarker information related to AD, is the prototype for the new MS database. To date, over 400 papers have been published using data from ADNI, which was started in 2004, said Dr. Rammohan. "It's a great model" that has contributed to great strides in the understanding of all areas of the disease, including early AD risks, he said. While it began as a North American database, it now collects data worldwide.
With NARCRMS, data will be entered by using unique identifiers, always preserving patient privacy. Dr. Rammohan foresees that at each patient visit, MRI, biomarker, and other information will be entered electronically. "There will be no paper, and no faxes," with information being collected through a system called REDcap (Research Electronic Data capture), said Dr. Rammohan. "When you close the screen, it's already on the server."
Every effort will be made to include minorities and different socioeconomic levels, and a Spanish version of the database will be available, he said. To broaden the reach, there will be apps for mobile devices.
Every CMSC member and every patient with MS in the United States can participate in NARCRMS, he said. Patients need to enroll in NARCOMS before their data can be available in NARCRMS.
This year, NARCMS is being incorporated and a charter established. Various "cores," including biomarkers, genetics, and health economics, will be developed during 2015 and 2016.
In response to a query from the audience about whether rehabilitation professionals would have access to the database, "to be able to mine it for potential research." Dr. Rammohan said this was an "excellent idea" because "rehabilitation is a huge part of this disease."
Asked to comment on this new database, Francois Bethoux, MD, a neurologist at the Cleveland Clinic in Ohio and editor in chief, International Journal of MS Care, told Medscape Medical News he thinks "it's a great idea."
Because it will include MRI and other biomarker information, it should provide "a full picture" for the neurologist, and not just patient-reported information, said Dr. Bethoux. Its open-access nature means that the database will be accessible to the community, "which is really what we need," he said.
The authors have disclosed no relevant financial relationships.
6th Cooperative Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee for Treatment and Research In Multiple Sclerosis (ACTRIMS).Opening Lecture. May 29, 2014.
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Cite this: New MS Database Could Transform Patient Care, Research - Medscape - May 30, 2014.