I think it’s great that therapies approved as treatments for multiple sclerosis are to be compared for safety and effectiveness. The move is long overdue.
Corrona Multiple Sclerosis Registry, which is to carry out the work, has been set up as a result to an important collaboration. A meeting of minds of the US’s National Multiple Sclerosis Society (NMSS) and Corrona led to the launch of the new registry.
The Corrona company is based in Cambridge, Massachusetts, and conducts observational cohort studies. These offer analytic expertise for clinical data, patient-reported measures and others to compare effectiveness, post-market safety reporting and commercial applications.
USA’s Food and Drug Administration (FDA) approved the first MS disease modifying therapy (DMT) in 1993. Today there are many more.
The registry will collect and analyze outcomes associated with several MS therapies. It has already enrolled its first patient, but plans to recruit 5,000 people with MS.
Effectiveness and safety: Data collection lags behind
Founding president of the Medical Partnerships 4 MS, Daniel Kantor, said in a press release: “MS research in the US lags behind other fields in collecting reliable real-world data to compare the safety and effectiveness of these therapies.”
Corronna says the registry will collect data from patients and their treating neurologists through questionnaires. It will include physician assessments and patient-reported outcomes.
Executive vice president of research at NMSS, Bruce Bebo, said: “Identifying the optimal treatment strategy is critical for people with MS and their healthcare providers. The collaboration with Corrona on the MS registry addresses this challenge. It furthers our goal of ensuring that people with MS have information, tools and resources to live their best lives.”
“Corrona is honored to partner with the National MS Society and US neurologists to create a national MS registry that can help guide treatment decisions for patients based on real-word comparative effectiveness and safety analyses,” said Jeff Greenberg, Corrona’s chief scientific officer.
For more information about the Corrona MS Registry, including enrolment details, you can contact ms@corrona.org or call (508) 408-5398.
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.
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