Since the approval of the first disease-modifying drug (DMD) for MS back in the mid-1990s, another dozen or so have been added as treatment options. But, just as MS affects each patient differently, so do the drugs. Missing has been a tool to follow MS patients and their treatments over the long term — something that will collect real-world data on the effectiveness and safety of these DMDs and how they impact each patient’s disease and quality of life.
Now, the National Multiple Sclerosis Society has teamed up with a company named Corrona to launch that kind of tool. It’s an MS registry. The company’s website describes it as follows:
“In general, clinical trials provide safety data on new treatments for 6 to 12 months, but the long-term safety profiles of agents remain unclear. As new drugs are approved for multiple sclerosis patients, there is a growing need for an independent registry that will collect long-term real world data on safety, comorbidities, and quality of life.”
The MS registry will collect questionnaires from neurologists and their patients. It will record the patients’ views of the progression of their disease as well the assessments of their neurologists, based on examinations and tests. This information will be matched to the DMDs the patients have been using.
Says Dr. Bruce Bebo, the MS Society’s VP of research:
“Identifying the optimal treatment strategy is a critical issue for people with MS and their healthcare providers. The collaboration with Corrona on the MS registry addresses this challenge and furthers our goal of ensuring that people with MS have the information, tools and resources to live their best lives.”
The MS registry opened its doors in August and its first participants have signed up. Corrona hopes to get a total of about 5,000.
You can learn more about the Corrona Multiple Sclerosis Registry and how to participate as a neurologist or a patient here. Or you can contact Corrona by emailing [email protected] or calling (508) 408-5398.
Other MS registries
There are at least two other registries that are trying to capture similar information, but with different focuses.
One is NARCOMS (North American Research Committee on MS), a voluntary, confidential registry that captures the real-life experiences of people living with MS. It’s been around since 1993. Patients have been followed via semiannual surveys for an average of six years. Sign up online at NARCOMS or call (800) 253-7884 weekdays 9 a.m.-5 p.m. Central time to request a paper enrollment form.
The other is iConquerMS. It started last year. Patients share health information via surveys, submit their ideas for future research, and engage with researchers to suggest how research studies should be designed to best meet the needs and interests of people living with MS. Join iConquerMS online. (FWIW, I participate in this.)
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.