MS Speaks

Multiple Sclerosis => GENERAL DISCUSSION - RESEARCH, NEWS => Topic started by: agate on October 21, 2017, 04:06:54 pm

Title: US National MS Society launches MS patient registry
Post by: agate on October 21, 2017, 04:06:54 pm
The National MS Society has announced its launch of an MS patient registry. For more information:

https://www.prnewswire.com/news-releases/corrona-and-the-national-multiple-sclerosis-society-announce-intent-to-collaborate-on-a-multiple-sclerosis-registry-to-study-the-comparative-effectiveness-and-safety-of-approved-therapies-300538204.html?platform=hootsuite (https://www.prnewswire.com/news-releases/corrona-and-the-national-multiple-sclerosis-society-announce-intent-to-collaborate-on-a-multiple-sclerosis-registry-to-study-the-comparative-effectiveness-and-safety-of-approved-therapies-300538204.html?platform=hootsuite)

Also, from PR Newswire (October 20, 2017):

Quote
Corrona and the National Multiple Sclerosis Society announce intent to collaborate on a multiple sclerosis registry to study the comparative effectiveness and safety of approved therapies

     

 
WALTHAM, Mass., Oct. 20, 2017 /PRNewswire/ -- Corrona, LLC and the National Multiple Sclerosis Society have announced their intent to collaborate on the launch of the Corrona Multiple Sclerosis (MS) Registry to study the comparative safety and effectiveness of approved MS therapies. The first patient has been enrolled, with initial recruitment goals to register approximately 5,000 people with MS. This national, observational registry will collect and analyze longitudinal outcomes associated with multiple sclerosis therapies.

The MS registry is Corrona's sixth patient registry, adding to existing North American registries in rheumatoid arthritis, psoriatic arthritis and spondyloarthritis, psoriasis, inflammatory bowel disease, and a rheumatoid arthritis registry in Japan. The registry collects data from patients with MS and their treating neurologists through questionnaires and includes both physician assessments and patient-reported outcomes.  Corrona's team of biostatisticians and epidemiologists will collaborate with the National MS Society, participating academic and private practice neurologists, as well as supporting pharmaceutical companies, to study the comparative safety and effectiveness of approved MS therapies.

Multiple sclerosis affects more than 2.3 million people worldwide1. Decades of research into MS and the basic workings of the immune and nervous systems have built a critical platform of knowledge for translating basic research to the clinic. "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 to information, tools and resources to live their best lives." said Dr. Bruce Bebo, Executive Vice President, Research of the National MS Society.

MS is currently managed through disease modifying treatments that prevent relapses (attacks or exacerbations), control MRI (magnetic resonance imaging) changes and slow the accumulation and progression of disability.  People with MS also co-manage their symptoms with their neurologists, and are prescribed medications to hasten recovery from relapses. "Since the introduction of the first FDA-approved MS disease modifying treatment in 1993, 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." said Dr. Daniel Kantor,  Director of Neurology at Florida Atlantic University's Charles E. Schmidt College of Medicine and Founding President of the Medical Partnership 4 MS (MP4MS).  Learn more about MS    

Corrona's collaboration with the National MS Society builds upon its successful ongoing collaboration for its Psoriasis registry with dermatologists and the National Psoriasis Foundation. "Corrona is honored to partner with the National MS Society and U.S. 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 Dr. Jeff Greenberg, Chief Scientific Officer of Corrona.

Learn more about the Corrona Multiple Sclerosis Registry and how to participate as a neurologist or a patient: visit https://www.corrona.org/registries/us-multiple-sclerosis-ms-registry.

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About Corrona

Corrona was founded in 2001 by leading physicians dedicated to advancing and improving the care of patients with chronic autoimmune diseases. Its mission is to advance research and improve the quality of patient care through world-class observational cohort studies. Corrona provides analytic expertise for longitudinal clinical data, patient reported measures, and research results to physician investigators, not-for-profit organizations and biopharmaceutical companies. Corrona data analysis provides a rich framework in which to explore topics such as comparative effectiveness, post market safety reporting, and commercial applications. Corrona has the ability to contextualize safety rates among multiple comparator arms for pharmacovigilance work. To date, Corrona has published over 100 full length manuscripts and over 300 abstracts using its data, which have appeared in top tier journals. Read more at www.corrona.org.

If you are interested in learning more about the Corrona MS Registry, please contact at ms@corrona.org, (508) 408-5398. If you are interested in becoming a participating clinical site, please complete the brief online survey using the link below.
https://www.surveymonkey.com/r/5Q668ST

1Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the prevalence of MS in the U.S. can only be estimated.

 

SOURCE Corrona; National Multiple Sclerosis Society