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NARCOMS Registry: A Multiple Sclerosis Registry

NCT01018537 · University of Texas Southwestern Medical Center
In plain English

Click the button to translate this study into plain language — what it is, who qualifies, and what participation looks like.

Official title
NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis
About this study
The data coordinating center, located at the University of Texas Southwestern Medical Center, 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 (Cleveland Clinic Foundation, University of Alabama at Birmingham, and the Dalhousie University in Canada). Over the past 30 years more than 42,000 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 over 100 peer-reviewed journal articles, 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.
Eligibility criteria
Inclusion Criteria: * Any individual who has been diagnosed with multiple sclerosis or clinically isolated syndrome * Must be at least 18 years of age Exclusion Criteria: * None
Study design
Enrollment target: 50000 participants
Age groups: adult, older_adult
Timeline
Starts: 1996-01
Estimated completion: 2050-12
Last updated: 2025-11-13
Primary outcomes
  • Disease progression over time of follow up (up to 15 years)
Sponsor
University of Texas Southwestern Medical Center · other
With: Consortium of Multiple Sclerosis Centers
Contacts & investigators
ContactNARCOMS Team · contact · MSregistry@narcoms.org · 1-214-648-4583
InvestigatorRobert J. Fox, M.D. · study_director, Mellen Center for MS / Cleveland Clinic
InvestigatorAmber Salter, Ph.D. · principal_investigator, University of Texas Southwestern Medical Center
InvestigatorGary R Cutter, Ph.D. · study_director, University of Alabama at Birmingham
All locations (1)
UT Southwestern Medical CenterRecruiting
Dallas, Texas, United States
NARCOMS Registry: A Multiple Sclerosis Registry · TrialPath