FW: eMS News: The Power of NARCOMS

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In this edition of eMS NewsJanuary 7, 2010

NARCOMSHealthy Lifestyle ToolsEstriol plus Copaxone, ORACLE and SankyoWe hear from you!Events and SeminarsResources

The Importance of NARCOMSBreaking News

By Dr. Vollmer, Medical Director of the Rocky Mountain MS Center

In 1996 the Consortium of Multiple Sclerosis Centers (CMSC) launched a project to develop a registry for patients with multiple sclerosis originally called NARCOMS, now referred to as “The MS Global Registry.” This registry was created to help facilitate research on the nature of the disease, its cause and its cure. As the current leader of this project, I’ve had the honor of being associated with the organization since its inception in 1993, and it has been very gratifying to see it grow to become the largest database focused on MS patients in the world.

It has also been gratifying to watch it develop as a research resource for a wide-range of investigators interested in issues related to MS. The database now has data on over 35,000 patients with approximately 15,000 patients actively involved at any given time. The project has been used by many different investigators, with generally between 10 and 15 research programs actively using the database at any given moment.

Indeed, the database has been extremely productive in terms of academic publications—the standard measure for success in research. In the last year alone there have been 15 peer–reviewed scientific papers published using information provided by the participants of the NARCOMS project. Overall, more than 34 peer-reviewed papers have been published in the last several years. They cover a wide variety of issues related to the nature of the disease and the needs of MS patients.

Previously located at the Rocky Mountain MS Center administrative offices, the project has recently undergone a major reorganization. Although I remain the project director, the database, statistical management and website development are now based at the University of Alabama under the direction of Cutter, Ph.D., and supported by a large and expert team of scientists, statisticians, programmers and others.

NARCOMS is vitally important in that it facilitates collaboration between centers of excellence in MS, which is essential for rapid progress in the development of better treatments for MS and for greater understanding of the disease. As mentioned above, the sharing of these data—the information that we collect from the more than 35,000 registered MS patients—has led to numerous peer-reviewed scientific papers. These publications are important because they include research discoveries that help to guide MS

researchers and physicians in expanding and improving MS treatment options.

(Cont. HERE)

Your Healthy Lifestyle Tools

Living Well with MS

Looking for a way to evaluate and improve your overall health—body, mind and spirit? In 2009 the University of Minnesota's Center for Spirituality & Healing and the Life Science Foundation launched a website that provides the necessary tools to make positive life adjustments in 2010 and beyond. Created through a collaboration between the two organizations, the Taking Charge of Your Health website provides a number of resources and invites visitors to better manage—and expand—their healthcare options by providing information and tools in three main sections: Creating a Healthy Lifestyle, Navigating the Healthcare System, and Healthy Practices. It also includes a blog, Taking Charge, which is updated by the Center for Spirituality & Healing's director, Jo Kreitzer. First introduced in 2005, the updated site—which went live in April 2009—invites visitors to expand their options with integrative and complementary therapies; become more informed and involved healthcare consumers; and care for overall body, mind, and spirit, according to Tony Baisley of the Center for Spirituality & Healing. In addition, the site content was collaboratively composed and reviewed by a number of healthcare professionals and experts, and is held up to the highest academic standards. One particularly helpful tool is the Healthy Lifestyle section. There you can choose from eight areas of emphasis (included in the wheel below). Each focus area offers an evaluation process through which individuals are able to gauge their strengths and weaknesses in regards to, for example, Stress Mastery. By evaluating yourself, the website offers an opportunity to reevaluate your current health practices and set future goals. It's a great way to start out the New Year!

For more information, visit the Taking Charge of Your Health website HERE.

Estriol, Impax and ORACLEClinical TrialsThe following studies are limited to people who can travel to the Rocky Mountain MS Center at Anschutz Medical Campus in Aurora, CO.

Copaxone plus Oral Estriol: The Rocky Mountain MS Center at Anschutz Medical Campus is looking for women with relapsing-remitting MS for a 24-month study to see if there are fewer relapses with the treatment of Copaxone injections plus oral estriol as compared to the treatment of Copaxone injections plus oral placebo. For more information, click HERE.

ORACLE: Oracle cladribine has recently been in the news. A recent study has shown that it can improve certain outcomes among people with MS. We are conducting an important clinical trial to answer a related question: whether oral cladribine can prevent certain complications among those who have had a single neurological event suggestive of MS. For more information, click HERE.

Sankyo: Sankyo belongs to the class of medications known as S1P receptor agonists, and is in early phase studies to determine its safety. This is one of the steps necessary before conducting a large clinical trial to determine if the agents are effective in MS. Find out more HERE.

If you would like to see a more complete list of clinical trials occurring at the Rocky Mountain MS Center at Anschutz Medical Campus, please click HERE.For information on various clinical trials throughout the United States, please visit www.clinicaltrials.gov

We hear from you!* Share your thoughts"Just a note about the latest eMS News about Pediatric MS. As a person with MS who has a daughter with MS, and who attempts to learn as much as possible about MS, I found the article by Dr. Teri Schreiner excellent. Her presentation was one of the most informative I have ever read. She has a unique way of making the subject matter very understandable. Thank you for bringing this to us. Keep up the good fight."-eMS News reader*"I've had MS since 1993. I am having more problems healthwise. I am interested in any info about MS. Our MS group leader sent us the link to your newsletter, and you are a breath of fresh air. Thank you"-eMS News reader* *All comments included in "Share your Thoughts" are the personal opinions of eMS News readers and do not represent those held by the Rocky Mountain MS Center.

Are you interesting in being part of a focus panel on eMS News? If you live in the Denver metro area, are able to come to the Rocky Mountain MS Center in Englewood, CO, and would like to share your thoughts on how we can improve this publication, please email

Bridget Blanning.

Have something to share? We'd love to hear from you! Send your comments to Bridget Blanningor call (303) 788-4030 X 114

Events and Educational Seminars To see our full calendar of events, please click HERE or go to www.mscenter.org Drag Queen BingoSupport our Young Professionals Network!Thursday, January 14thTwo sessions: 7 p.m. and 9:30 p.m.Lannie's Clocktower CabaretTo get your tickets today, click HERE.

Conversation on MS with Dr. Vollmer

Wednesday, January 20th

6 p.m. to 7:30 p.m.

Smoky Hills Library

5430 S. Biscay CircleCentennial, CO

Register online HERE.

Resources

NARCOMS is an active national registry of over 34,000 individuals with MS. Help spread the word by telling others about this important project. To register, please click HERE.

KADEP, our specialized adult day program, offers clients over 70 recreational and therapeutic activities weekly. Meet participants and get daily updates at the KADEP blog.The Rocky Mountain MS Center Tissue Bank is actively seeking donors - both people with MS and those without. Help researchers as they work toward discovering a cure to MS. Find out more HERE.MSYPN- our Young Professionals Network - wants you! For more information, please contact Bridget Blanning at (303) 788-4030 ext. 114.

eMS News and InforMS Archives: Read previous editions our of newsletters!

Rocky Mountain Multiple Sclerosis Center 701 East Hampden Avenue, Suite 420 | Englewood, Colorado 80113-2760Administration 303-788-4030 | Fax 303-788-5418 | www.mscenter.org

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