UT Southwestern Medical Center
Dallas, Texas, 75390-8806, United States
Location status: Recruiting
Recruiting
NCT Number: NCT01018537
NARCOMS Registry: A Multiple Sclerosis Registry
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 through www.narcoms.org (or directly using the following link: https://redcap.link/py2rnyyn) or you can request a mail-in survey be sent to you by emailing [email protected]. You will be asked to update your information, online or by mail, twice a year. Each update survey typically takes less than 20 minutes to complete.
There is no cost to participate. For your participation you are offered a free subscription to the NARCOMS quarterly magazine, NARCOMS Now. NARCOMS Now provides a reliable source of information about the latest in MS research and disease management. You can stop participating in the registry 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.
Recruiting
Interested in participating?
Request InfoKey information
Conditions
Age range
18 year and older
Sex eligibility
All sexes
Study type
Observational
Primary location
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.
Who can participate
Healthy volunteers accepted: No
Only the study team can determine whether someone qualifies for participation.
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
Treatment and study plan
Primary outcomes
-
Disease progression over time of follow up
Time frame: up to 15 years
Disease Progression measured using the Patient Determined Disease Steps
Secondary outcomes
-
Contributing factors to change in MS disease status
Time frame: up to 15 years
Factors include, but not limited to, demographics, lifestyle and clinical characteristics
Other outcomes
-
Medication usage in multiple sclerosis
Time frame: up to 15 years
Disease modifying therapy use is collected from participants
Study contacts
Contact information is provided by the study sponsor or research team.
Sponsors and collaborators
Lead sponsor
University of Texas Southwestern Medical Center
Other
Collaborators
- Consortium of Multiple Sclerosis Centers
Registry information
Official study title
NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis
Acronym: NARCOMS
Important dates
- Study start
- 1996
- Primary completion
- 2050
- Study completion
- 2050
- First posted
- Nov 23, 2009
- Registry last updated
- Nov 13, 2025
OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.
View the official ClinicalTrials.gov record (opens in a new tab)This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.
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