Global Demyelinating Disease Registry (NARCOMS)
This project is based on the idea that we can learn about the complexities of MS by following disease and treatment patterns in a large group of people over several years. The information gathered is used for research only. Results are presented in summary form only. All details submitted by registry participants is strictly confidential.
To participate in NARCOMS complete the baseline enrollment survey online at www.narcoms.org or you can request a mail-in survey be sent to you using the contact information provided. You will be asked to update the survey, online or by mail, twice a year. Each survey typically takes less than 20 minutes to complete. Surveys are available in English and Spanish.
There is no cost to participate, for your participation you are offered a free subscription to the NARCOMS Quarterly Magazine. A quarterly magazine delivered to all NARCOMS participants provides a reliable source of information about the latest in MS research and disease management. You can quit participating at any time.
You may also receive additional surveys or information on clinical trials. You are not obligated to participate and these additional studies will always come directly from NARCOMS. Your contact information will not be shared or sold to other parties.
|Study Design:||Time Perspective: Prospective|
|Official Title:||NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis|
- Disease progression over time of follow up [ Time Frame: up to 15 years ]
- Contributing factors to change in MS disease status [ Time Frame: up to 15 years ]
- Medication usage in multiple sclerosis [ Time Frame: up to 15 years ]
|Study Start Date:||January 1996|
|Estimated Primary Completion Date:||December 2020 (Final data collection date for primary outcome measure)|
The data coordinating center, located at University of Alabama at Birmingham (UAB), maintains NARCOMS, the worlds largest voluntary, patient driven MS registry. The registry involves personnel from at least three other sites in the US and Canada (Rocky Mountain Multiple Sclerosis Center Anschutz Medical Campus in Aurora Colorado, Barrows Neurological Institute in Phoenix Arizona, and the University of Manitoba in Canada). Over the past 10 years more than 35,000 people with MS across the U.S., Canada and over 50 other countries, including over 4,000 Veterans, have participated in the registry by submitting their health-related data by mail or online. Registry data have been featured in 34 peer-reviewed journal articles and more than 80 scientific posters and presentations. These reports have provided information to guide new research. They also provide evidence supporting the approval of new drugs in the fight against MS.
The North American Research Committee on Multiple Sclerosis (NARCOMS) is supported in part by the Consortium of Multiple Sclerosis Centers (CMSC), a not-for-profit professional organization for multiple sclerosis (MS) healthcare providers and researchers involving 198 participating centers of the MS treatment and research community.
Please refer to this study by its ClinicalTrials.gov identifier: NCT01018537
|Contact: NARCOMS Team||1-800-253-7884||MSregistry@narcoms.org|
|United States, Alabama|
|University of Alabama at Birmingham||Recruiting|
|Birmingham, Alabama, United States, 35294|
|Contact: NARCOMS Team 800-253-7884 MSregistry@narcoms.org|
|Principal Investigator: Gary Cutter, Ph.D.|
|Principal Investigator:||Robert J. Fox, M.D.||Mellen Center for MS / Cleveland Clinic|
|Study Director:||Gary Cutter, Ph.D.||University of Alabama at Birmingham|
|Study Chair:||Tuula Tyry, Ph.D.||Barrow Neurological Institute|