AzTrials
AzTrials

Multiple SclerosisNARCOMSNCT01018537

NARCOMS Registry: A Multiple Sclerosis Registry

An observational study of Multiple Sclerosis, run by University of Texas Southwestern Medical Center at 1 site in United States.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
Search all trials

Trial summary

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. Read more about this study

Who is it for?
Ages 18 years and older
Conditions the study is for
Multiple Sclerosis
How many people
50,000 participants
Where
1 siteUnited States
Study dates
Jan 1996to Dec 2050
How long will I take part?
10 Years
Phase
Observational
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

Study population: Individuals who have been diagnosed with multiple sclerosis

Who may be able to join

  • Any individual who has been diagnosed with multiple sclerosis or clinically isolated syndrome
  • Must be at least 18 years of age

Who cannot join

  • None

Trial locations and contacts

1 site in 1 country. Contact the study team or a site near you to ask about taking part.

NARCOMS Team contact

1-214-648-4583

MSregistry@narcoms.org

United States1 site, 1 recruiting

  • UT Southwestern Medical Center

    Dallas, Texas, 75390-8806

    NARCOMS Team, 214-648-4583, MSregistry@narcoms.org

    Amber Salter, Ph.D.

    Recruiting

Other trials in United States

About this study

Official title: NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis

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 MSregistry@narcoms.org. 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.

Read more

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.

Read the detailed description

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.

Keywords
Multiple Sclerosis, NARCOMS, Patient Registry, Registry
Medical subject headings
Multiple Sclerosis

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Disease progression over time of follow up

    Disease Progression measured using the Patient Determined Disease Steps

    Measured: up to 15 years

Secondary outcomes (1)

  1. Contributing factors to change in MS disease status

    Factors include, but not limited to, demographics, lifestyle and clinical characteristics

    Measured: up to 15 years

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted23 Nov 2009 (estimated)
  2. Study startJan 1996
  3. Primary completionDec 2050 (estimated)
  4. Study completionDec 2050 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Other
Time perspective
Prospective
Enrolment
50,000 participants (estimated)
Target duration
10 Years
IDs, dates and publications
ClinicalTrials.gov ID
NCT01018537
Sponsor's protocol ID
20081794
Acronym
NARCOMS
Status last verified
Nov 2025
First submitted
19 Nov 2009
Last updated
13 Nov 2025
Results posted
No
Data monitoring committee
No

Publications

  • Mahajan ST, Patel PB, Marrie RA. Under treatment of overactive bladder symptoms in patients with multiple sclerosis: an ancillary analysis of the NARCOMS Patient Registry. J Urol. 2010 Apr;183(4):1432-7. doi: 10.1016/j.juro.2009.12.029. Epub 2010 Feb 20.

    PubMed 20171697

  • Buchanan RJ, Chakravorty BJ, Tyry T, Hatcher W, Vollmer T. Age-related comparisons of people with multiple sclerosis: demographic, disease, and treatment characteristics. NeuroRehabilitation. 2009;25(4):271-8. doi: 10.3233/NRE-2009-0525.

    PubMed 20037220

  • Marrie RA, Cutter G, Tyry T, Vollmer T. A cross-sectional study of bone health in multiple sclerosis. Neurology. 2009 Oct 27;73(17):1394-8. doi: 10.1212/WNL.0b013e3181beece8.

    PubMed 19858462

  • Hadjimichael O, Vollmer T, Oleen-Burkey M; North American Research Committee on Multiple Sclerosis. Fatigue characteristics in multiple sclerosis: the North American Research Committee on Multiple Sclerosis (NARCOMS) survey. Health Qual Life Outcomes. 2008 Nov 14;6:100. doi: 10.1186/1477-7525-6-100.

    PubMed 19014588

  • Marrie RA, Cutter G, Tyry T, Campagnolo D, Vollmer T. Smoking status over two years in patients with multiple sclerosis. Neuroepidemiology. 2009;32(1):72-9. doi: 10.1159/000170910. Epub 2008 Nov 12.

    PubMed 19001800

  • Marrie R, Horwitz R, Cutter G, Tyry T, Campagnolo D, Vollmer T. High frequency of adverse health behaviors in multiple sclerosis. Mult Scler. 2009 Jan;15(1):105-13. doi: 10.1177/1352458508096680. Epub 2008 Oct 9.

    PubMed 18845651

  • Marrie R, Horwitz R, Cutter G, Tyry T, Campagnolo D, Vollmer T. Comorbidity, socioeconomic status and multiple sclerosis. Mult Scler. 2008 Sep;14(8):1091-8. doi: 10.1177/1352458508092263.

    PubMed 18728060

  • Julian LJ, Vella L, Vollmer T, Hadjimichael O, Mohr DC. Employment in multiple sclerosis. Exiting and re-entering the work force. J Neurol. 2008 Sep;255(9):1354-60. doi: 10.1007/s00415-008-0910-y. Epub 2008 Jul 17.

    PubMed 18677639

  • Marrie RA, Cutter G, Tyry T, Vollmer T, Campagnolo D. Disparities in the management of multiple sclerosis-related bladder symptoms. Neurology. 2007 Jun 5;68(23):1971-8. doi: 10.1212/01.wnl.0000264416.53077.8b.

    PubMed 17548546

  • Marrie RA, Cutter G, Tyry T, Campagnolo D, Vollmer T. Validation of the NARCOMS registry: diagnosis. Mult Scler. 2007 Jul;13(6):770-5. doi: 10.1177/1352458506075031. Epub 2007 Mar 15.

    PubMed 17525097

  • Hadjimichael O, Kerns RD, Rizzo MA, Cutter G, Vollmer T. Persistent pain and uncomfortable sensations in persons with multiple sclerosis. Pain. 2007 Jan;127(1-2):35-41. doi: 10.1016/j.pain.2006.07.015. Epub 2006 Sep 1.

    PubMed 16949751

  • Kobelt G, Berg J, Atherly D, Hadjimichael O. Costs and quality of life in multiple sclerosis: a cross-sectional study in the United States. Neurology. 2006 Jun 13;66(11):1696-702. doi: 10.1212/01.wnl.0000218309.01322.5c.

    PubMed 16769943

  • Marrie RA, Cutter G, Tyry T, Vollmer T, Campagnolo D. Does multiple sclerosis-associated disability differ between races? Neurology. 2006 Apr 25;66(8):1235-40. doi: 10.1212/01.wnl.0000208505.81912.82.

    PubMed 16636241

  • Marrie RA, Cutter G, Tyry T, Hadjimichael O, Campagnolo D, Vollmer T. Changes in the ascertainment of multiple sclerosis. Neurology. 2005 Oct 11;65(7):1066-70. doi: 10.1212/01.wnl.0000178891.20579.64.

    PubMed 16217060

  • Marrie RA, Cutter G, Tyry T, Hadjimichael O, Campagnolo D, Vollmer T. Validation of the NARCOMS registry: fatigue assessment. Mult Scler. 2005 Oct;11(5):583-4. doi: 10.1191/1352458505ms1216oa.

    PubMed 16193897

Questions about this trial

What is this clinical trial studying?

An observational study of Multiple Sclerosis, run by University of Texas Southwestern Medical Center at 1 site in United States.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 13 Nov 2025. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact NARCOMS Team (1-214-648-4583, MSregistry@narcoms.org), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Disease progression over time of follow up (time frame: up to 15 years). It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT01018537, which also lists 46 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 13 Nov 2025.

AzTrials uses cookies for analytics and advertising. You can accept or reject them; the site works either way. Privacy Policy.

Free account

Keep searching with a free account

You’ve used your 3 free searches for this session. Log in or create a free AzTrials account to keep searching clinical trials and save the ones you want to follow.

Create a free accountLog in
NARCOMS Registry: A Multiple Sclerosis Registry | AzTrials