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National MS Society Endorses MS “NARCRMS” Data Registry

December 4, 2017

Collaboration Will Result in Better Understanding of MS and Better Care

The National Multiple Sclerosis Society is proud to announce its endorsement of the North American Registry for Care and Research in MS (NARCRMS). NARCRMS is a physician/clinician-based MS registry and longitudinal database of clinical records and patient-centered outcomes, under the auspices of the Consortium of Multiple Sclerosis Centers (CMSC).
 
The mission of NARCRMS is to provide clinicians and researchers with a greater, more integrated ability to track the incidence, prevalence and course of multiple sclerosis. Through information sharing, NARCRMS seeks to improve the understanding of MS and facilitate care at every level.
 
Physician-collected data will include neuroimaging, genetic markers, clinical and cognitive assessments, and specimen collection and testing for the study and validation of biomarkers of disease progression. Patient-reported outcomes focused on the challenges of MS and its impact on daily life will complement physician-generated information.
 
“NARCRMS addresses a pressing need in MS research and care, “said Cyndi Zagieboylo, President and CEO of the National MS Society. “By collaborating with NARCRMS, we can more effectively utilize data to advance our understanding of MS and do more to help people with MS live their best lives.”
 
June Halper, President and CEO of the CMSC says, “We are grateful the Society has decided to partner with us on this pioneering effort to accelerate collaboration and more effective utilization of data on behalf of all people living with MS.”
 
Kottil Rammohan, M.D., director of NARCRMS echoed Halper’s sentiments saying, “We are delighted to have the National MS Society on board and look forward to a long and productive collaboration.”
 
NARCRMS is a highly collaborative effort involving other MS registries, clinicians, researchers, and people living with MS.  It will allow for the linkage of centers and facilitates along with regional analysis of data by state, region, and zip code. NARCRMS will facilitate the recruitment of participants for clinical trials as the registry grows.
 
In addition, NARCRMS is unique in being the first open source database to link North American MS Centers in the US and parts of Canada.
 
To date NARCRMS has recruited 10 centers and enrolled 113 patients with an additional three centers expected to join shortly. For more information: www.narcrms.org.
 
This clinician-driven registry builds on a parallel patient-driven registry called the North American Research Committee on Multiple Sclerosis (NARCOMS). NARCOMS is the oldest patient-driven registry in the U.S. It uses the power of the patient experience to improve clinical care and quality of life for persons living with MS. 

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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