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Company, Foundation Start Multiple Sclerosis Registry

Nerve cells in brain illustration


20 October 2017. National Multiple Sclerosis Society and the company Corrona LLC are establishing a registry of people with multiple sclerosis in North America to help assess the long-term safety and effectiveness of therapies approved to treat the disorder. The registry is aiming to sign up 5,000 individuals with the disease, with the parties reporting today the enrollment of its first participant.

The new registry is the 6th collection of patients in North America established by Corrona, all of which deal with autoimmune disorders. Multiple sclerosis is also an autoimmune condition, where the immune system attacks the central nervous system and damages myelin, the fatty, protective substance around nerve fibers, as well as nerve cells themselves. Scar tissue from the damaged myelin, known as sclerosis, distorts the nerve signals sent to and from the brain and spinal cord, causing symptoms ranging from mild numbness to loss of vision or paralysis.

People with multiple sclerosis taking part in the registry will complete questionnaires about their experiences with the disease and treatments, with their physicians also reporting on the patients’ outcomes. Statisticians and epidemiologists on Corrona’s staff will collaborate with participating neurologists from the academic world and private practice to study the comparative effectiveness of approved multiple sclerosis treatments. While pharmaceutical companies are expected to support the registry, Corrona emphasizes that its work is done independently of the pharma industry.

Most treatments for multiple sclerosis today are designed to help patients manage their symptoms, for example, to slow the progression of disability or speed the recovery from relapses. While clinical trials provide useful data on patients’ experiences with new drugs for 6 to 12 months, says Corrona, there is little data showing long-term safety profiles of treatment and their effects on patients’ quality of life.

“Since the introduction of the first FDA-approved MS disease modifying treatment in 1993,” says Daniel Kantor, Director of Neurology at Florida Atlantic University in a Corrona statement,  “there has been an unprecedented leap forward in the number and variety of proactive medications available to our patients, but MS research in the U.S. lags behind other fields in collecting reliable real world data to compare the safety and effectiveness of therapies approved in the U.S.” Kantor leads a group of scientific advisors to the registry.

The collaboration is also expected to provide guidance to physicians to help determine optimal treatment strategies for patients. “Identifying the optimal treatment strategy is a critical issue for people with MS and their health care providers,” adds Bruce Bebo, Executive Vice President, Research of the National Multiple Sclerosis Society. “The collaboration with Corrona on the MS registry addresses this challenge and furthers our goal of ensuring that people with MS have to information, tools and resources to live their best lives.”

Corrona established a similar registry for people with psoriasis, another autoimmune disorder, in 2015. As reported by Science & Enterprise, that registry is enrolling 3,000 participants to track their experiences with several psoriasis drugs for 8 years.

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