Clinical Trials
Thanks to significant advances in research, the FDA has approved
several treatments that may alter the underlying disease course of multiple
sclerosis, and early treatment is critically important.
NARCOMS: Making Strides in MS Research
Understanding the complexities of multiple sclerosis (MS) — from its effect on the
central nervous system to its impact on daily activities — has been a primary goal
of researchers for many years. In the early 1990s, researchers from all over the
country were working independently on studies designed to increase our knowledge of MS.
One time-consuming aspect of these studies was finding people living with MS who were
interested in participating in studies involving drug trials, alternative therapies,
symptomatic therapies and more. Members of the
Consortium of Multiple Sclerosis Centers (CMSC), the National Multiple Sclerosis Society,
Paralyzed Veterans of America and the Eastern Paralyzed Veterans Association (EPVA)
saw an opportunity to bring researchers and patients together to help speed
research toward a cure; thus, the NARCOMS project began.
About NARCOMS
NARCOMS, which stands for the North American Research Committee on Multiple Sclerosis,
is a patient registry. It is a database containing information from thousands of people
living with MS, including answers to questions about symptoms, treatments, effects of MS
and more. People who register with NARCOMS are asked to update their information twice a year.
Researchers use the NARCOMS registry as a tool to reach people living with MS quickly
and easily. People with MS who register with NARCOMS may be invited to participate in
research studies. This participation can come in many forms, from answering a few
survey questions (either on paper or online) to participating in a telephone interview,
or even joining a clinical trial involving a drug therapy. Participation in any form is
always voluntary.
The NARCOMS registry is based at the Barrow Neurological Institute in Phoenix, Arizona.
The program's director is Dr. Timothy Vollmer, formerly Director of the MS Research
Program at Yale University. Dr. Vollmer is nationally recognized for his extensive
work in the field of neuroimmunology. Support for the project is provided in part
by pharmaceutical companies such as Teva Neuroscience.
What We Learn From NARCOMS
In addition to putting researchers in touch with patients, the NARCOMS registry is
used to help understand trends in MS, in both the general MS population and in people
with particular types of MS. Analysts study the data collected in the initial survey
and each 6-month update to look for new insights. Results are often published in
journals, on Web sites and in the Multiple Sclerosis Quarterly Report (MSQR), a
publication of EPVA and the CMSC.
According to the CMSC, data from NARCOMS is used to monitor the effects of various MS
treatments and to provide ideas for future research. Data may also be used to study
specific symptoms. For example, by analyzing the data available in the registry,
researchers are able to track vision problems among participants to better understand
who is affected by these symptoms and to what degree.
Joining the Registry
Participation in the NARCOMS registry is voluntary and free of charge. If you choose to
participate, the information you provide will be used for research purposes only.
The first step is completing an enrollment form. This form consists of approximately 50
questions about demographics, health insurance and MS medical history. The form can be
obtained online at www.mscare.org, by e-mailing narcoms@chw.edu or by calling NARCOMS
staff at 1-800-253-7884.
After the initial form is completed, updates will be sent twice a year. The goals are to
keep information in the registry as up-to-date as possible and to monitor long-term
trends in the progression of MS disease in patients at a national and international level.
Each person who registers with NARCOMS also receives a free subscription to the MSQR.
The MSQR includes the latest in MS research news, original articles, updates on the
registry and an extensive list of current clinical trials involving MS.
For More Information
If you would like more information about the NARCOMS registry, or if you would like
to register, please visit www.mscare.org or call NARCOMS staff at 1-800-253-7884.
You can enroll on line in the CMSC/NARCOMS
Multiple Sclerosis Patient Registry by submitting an enrollment questionnaire.
The enrollment is free of cost and promotes Multiple Sclerosis Research. Your information
is kept strictly confidential.
CMSC/NARCOMS
CMSC/NARCOMS has
developed an MS Patient Registry setting a world standard for data collection.
CMSC/NARCOMS was created to help facilitate multi-center research in the broad
field of Multiple Sclerosis. Collaboration between centers of excellence in
Multiple Sclerosis is essential for rapid progress in the development of
better treatments for MS and for greater understanding of the disease.
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