NARCOMS Registry: A Multiple Sclerosis Registry

NCT01018537 | Recruiting

• 1 other identifier: 20081794
• Study Type: observational
• Target: 50,000
• Locations: 1 country
• Sites: 1

Brief 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. 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. 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.

Conditions

Multiple Sclerosis

Keywords

Multiple Sclerosis; NARCOMS; Patient Registry; Registry

Outcome Measures

Primary Outcomes (1)

• Disease progression over time of follow up

  Disease Progression measured using the Patient Determined Disease Steps

  up to 15 years

Secondary Outcomes (1)

• Contributing factors to change in MS disease status

  up to 15 years

Other Outcomes (1)

• Medication usage in multiple sclerosis

  up to 15 years

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Individuals who have been diagnosed with multiple sclerosis

You may qualify if:

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

You may not qualify if:

• None

Sponsors & Collaborators

• University of Texas Southwestern Medical Center: lead
• Consortium of Multiple Sclerosis Centers: collaborator

Study Sites (1)

UT Southwestern Medical Center

Dallas, Texas, 75390-8806, United States

RECRUITING

Related Publications (46)

• 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.

  PMID: 20171697 BACKGROUND

• 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.

  PMID: 20037220 BACKGROUND

• 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.

  PMID: 19858462 BACKGROUND

• 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.

  PMID: 19014588 BACKGROUND

• 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.

  PMID: 19001800 BACKGROUND

• 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.

  PMID: 18845651 BACKGROUND

• 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.

  PMID: 18728060 BACKGROUND

• 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.

  PMID: 18677639 BACKGROUND

• 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.

  PMID: 17548546 BACKGROUND

• 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.

  PMID: 17525097 BACKGROUND

• 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.

  PMID: 16949751 BACKGROUND

• 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.

  PMID: 16769943 BACKGROUND

• 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.

  PMID: 16636241 BACKGROUND

• 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.

  PMID: 16217060 BACKGROUND

• 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.

  PMID: 16193897 BACKGROUND

• Marrie RA, Cutter G, Tyry T, Hadjimichael O, Vollmer T. Validation of the NARCOMS Registry: pain assessment. Mult Scler. 2005 Jun;11(3):338-42. doi: 10.1191/1352458505ms1167oa.

  PMID: 15957517 BACKGROUND

• Lo AC, Hadjimichael O, Vollmer TL. Treatment patterns of multiple sclerosis patients: a comparison of veterans and non-veterans using the NARCOMS registry. Mult Scler. 2005 Feb;11(1):33-40. doi: 10.1191/1352458505ms1136oa.

  PMID: 15732264 BACKGROUND

• Rizzo MA, Hadjimichael OC, Preiningerova J, Vollmer TL. Prevalence and treatment of spasticity reported by multiple sclerosis patients. Mult Scler. 2004 Oct;10(5):589-95. doi: 10.1191/1352458504ms1085oa.

  PMID: 15471378 BACKGROUND

• Marrie RA, Hadjimichael O, Vollmer T. Predictors of alternative medicine use by multiple sclerosis patients. Mult Scler. 2003 Oct;9(5):461-6. doi: 10.1191/1352458503ms953oa.

  PMID: 14582770 BACKGROUND

• Buchanan RJ, Radin D, Chakravorty BJ, Tyry T. Informal care giving to more disabled people with multiple sclerosis. Disabil Rehabil. 2009;31(15):1244-56. doi: 10.1080/09638280802532779.

  PMID: 19802928 BACKGROUND

• Buchanan R, Radin D, Chakravorty BJ, Tyry T. Perceptions of informal care givers: health and support services provided to people with multiple sclerosis. Disabil Rehabil. 2010;32(6):500-10. doi: 10.3109/09638280903171485.

  PMID: 19852704 BACKGROUND

• Finlayson M, Cho C. A descriptive profile of caregivers of older adults with MS and the assistance they provide. Disabil Rehabil. 2008;30(24):1848-57. doi: 10.1080/09638280701707324.

  PMID: 18608376 BACKGROUND

• Fraser C, Hadjimichael O, Vollmer T. Predictors of adherence to glatiramer acetate therapy in individuals with self-reported progressive forms of multiple sclerosis. J Neurosci Nurs. 2003 Jun;35(3):163-70. doi: 10.1097/01376517-200306000-00006.

  PMID: 12830664 BACKGROUND

• Fraser C, Morgante L, Hadjimichael O, Vollmer T. A prospective study of adherence to glatiramer acetate in individuals with multiple sclerosis. J Neurosci Nurs. 2004 Jun;36(3):120-9. doi: 10.1097/01376517-200406000-00002.

  PMID: 15233411 BACKGROUND

• Marrie RA, Horwitz R, Cutter G, Tyry T, Campagnolo D, Vollmer T. Comorbidity delays diagnosis and increases disability at diagnosis in MS. Neurology. 2009 Jan 13;72(2):117-24. doi: 10.1212/01.wnl.0000333252.78173.5f. Epub 2008 Oct 29.

  PMID: 18971448 BACKGROUND

• Marrie RA, Rudick R, Horwitz R, Cutter G, Tyry T, Campagnolo D, Vollmer T. Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis. Neurology. 2010 Mar 30;74(13):1041-7. doi: 10.1212/WNL.0b013e3181d6b125.

  PMID: 20350978 BACKGROUND

• Buchanan RJ, Minden SL, Chakravorty BJ, Hatcher W, Tyry T, Vollmer T. A pilot study of young adults with multiple sclerosis: demographic, disease, treatment, and psychosocial characteristics. Disabil Health J. 2010 Oct;3(4):262-70. doi: 10.1016/j.dhjo.2009.09.003. Epub 2009 Nov 26.

  PMID: 21122795 BACKGROUND

• Marrie RA, Horwitz RI, Cutter G, Tyry T, Vollmer T. Association between comorbidity and clinical characteristics of MS. Acta Neurol Scand. 2011 Aug;124(2):135-41. doi: 10.1111/j.1600-0404.2010.01436.x. Epub 2010 Sep 29.

  PMID: 20880264 BACKGROUND

• Salter AR, Cutter GR, Tyry T, Marrie RA, Vollmer T. Impact of loss of mobility on instrumental activities of daily living and socioeconomic status in patients with MS. Curr Med Res Opin. 2010 Feb;26(2):493-500. doi: 10.1185/03007990903500649.

  PMID: 20014979 BACKGROUND

• Buchanan RJ, Zuniga MA, Carrillo-Zuniga G, Chakravorty BJ, Tyry T, Moreau RL, Huang C, Vollmer T. Comparisons of Latinos, African Americans, and Caucasians with multiple sclerosis. Ethn Dis. 2010 Autumn;20(4):451-7.

  PMID: 21305836 BACKGROUND

• Marrie RA, Horwitz R, Cutter G, Tyry T. Cumulative impact of comorbidity on quality of life in MS. Acta Neurol Scand. 2012 Mar;125(3):180-6. doi: 10.1111/j.1600-0404.2011.01526.x. Epub 2011 May 26.

  PMID: 21615355 BACKGROUND

• Marrie RA, Horwitz RI, Cutter G, Tyry T, Vollmer T. Smokers with multiple sclerosis are more likely to report comorbid autoimmune diseases. Neuroepidemiology. 2011;36(2):85-90. doi: 10.1159/000323948. Epub 2011 Feb 1.

  PMID: 21282965 BACKGROUND

• Cutter GR, Zimmerman J, Salter AR, Knappertz V, Suarez G, Waterbor J, Howard VJ, Marrie RA. Causes of death among persons with multiple sclerosis. Mult Scler Relat Disord. 2015 Sep;4(5):484-490. doi: 10.1016/j.msard.2015.07.008. Epub 2015 Jul 18.

  PMID: 26346799 BACKGROUND

• Bethoux F, Marrie RA. A Cross-Sectional Study of the Impact of Spasticity on Daily Activities in Multiple Sclerosis. Patient. 2016 Dec;9(6):537-546. doi: 10.1007/s40271-016-0173-0.

  PMID: 27154536 BACKGROUND

• Wang G, Marrie RA, Salter AR, Fox R, Cofield SS, Tyry T, Cutter GR. Health insurance affects the use of disease-modifying therapy in multiple sclerosis. Neurology. 2016 Jul 26;87(4):365-74. doi: 10.1212/WNL.0000000000002887. Epub 2016 Jun 29.

  PMID: 27358338 BACKGROUND

• Salter A, Tyry T, Wang G, Fox RJ, Cutter G, Marrie RA. Examining the joint effect of disability, health behaviors, and comorbidity on mortality in MS. Neurol Clin Pract. 2016 Oct;6(5):397-408. doi: 10.1212/CPJ.0000000000000269.

  PMID: 27847682 BACKGROUND

• Salter A, Thomas N, Tyry T, Cutter G, Marrie RA. Employment and absenteeism in working-age persons with multiple sclerosis. J Med Econ. 2017 May;20(5):493-502. doi: 10.1080/13696998.2016.1277229. Epub 2017 Jan 25.

  PMID: 28035846 BACKGROUND

• Reider N, Salter AR, Cutter GR, Tyry T, Marrie RA. Potentially Modifiable Factors Associated With Physical Activity in Individuals With Multiple Sclerosis. Res Nurs Health. 2017 Apr;40(2):143-152. doi: 10.1002/nur.21783. Epub 2017 Feb 6.

  PMID: 28165143 BACKGROUND

• Marrie RA, Salter A, Tyry T, Cutter GR, Cofield S, Fox RJ. High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. 2017 Apr 18;88(16):1528-1534. doi: 10.1212/WNL.0000000000003831. Epub 2017 Mar 15.

  PMID: 28298551 BACKGROUND

• Marrie RA, Cutter GR, Tyry T, Cofield SS, Fox R, Salter A. Upper limb impairment is associated with use of assistive devices and unemployment in multiple sclerosis. Mult Scler Relat Disord. 2017 Apr;13:87-92. doi: 10.1016/j.msard.2017.02.013. Epub 2017 Feb 20.

  PMID: 28427709 BACKGROUND

• Salter A, Thomas NP, Tyry T, Cutter GR, Marrie RA. A contemporary profile of primary progressive multiple sclerosis participants from the NARCOMS Registry. Mult Scler. 2018 Jun;24(7):951-962. doi: 10.1177/1352458517711274. Epub 2017 May 19.

  PMID: 28524746 BACKGROUND

• Marrie RA, Sharma M, Cutter GR, Fox RJ, Salter A. Perspectives of People With Multiple Sclerosis Regarding Data Linkage and Sharing. Neurology. 2025 May 13;104(9):e213587. doi: 10.1212/WNL.0000000000213587. Epub 2025 Apr 8.

  PMID: 40198867 BACKGROUND

• Salter A, Lancia S, Sharma M, Cutter GR, Fox RJ, Marrie RA. Infection, Relapses, and Pseudo-Relapses in Individuals With Multiple Sclerosis. Neurol Clin Pract. 2025 Aug;15(4):e200493. doi: 10.1212/CPJ.0000000000200493. Epub 2025 Jun 4.

  PMID: 40510870 BACKGROUND

• Salter A, Lancia S, Cutter GR, Fox RJ, Marrie RA. Effects of COVID-19 Infection on Symptom Severity and Disability in Multiple Sclerosis. Neurology. 2025 Jan 28;104(2):e210149. doi: 10.1212/WNL.0000000000210149. Epub 2024 Dec 23.

  PMID: 39715473 BACKGROUND

• O'Mahony J, Salter A, Ciftci-Kavaklioglu B, Fox RJ, Cutter GR, Marrie RA. Physical and Mental Health-Related Quality of Life Trajectories Among People With Multiple Sclerosis. Neurology. 2022 Oct 3;99(14):e1538-e1548. doi: 10.1212/WNL.0000000000200931.

  PMID: 35948450 BACKGROUND

• Marrie RA, Cutter GR, Fox RJ, Vollmer T, Tyry T, Salter A. NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights. Int J MS Care. 2021 Nov-Dec;23(6):276-284. doi: 10.7224/1537-2073.2020-133. Epub 2021 Dec 29.

  PMID: 35035299 BACKGROUND

Related Links

• NARCOMS homepage where you can get more information or enroll in the registry.
• Consortium of Multiple Sclerosis Centers (CMSC) homepage
• NARCOMS PubMed Bibliography

MeSH Terms

Conditions

Multiple Sclerosis

Condition Hierarchy (Ancestors)

Demyelinating Autoimmune Diseases, CNS; Autoimmune Diseases of the Nervous System; Nervous System Diseases; Demyelinating Diseases; Autoimmune Diseases; Immune System Diseases

Study Officials

• Robert J. Fox, M.D.

  Mellen Center for MS / Cleveland Clinic

  STUDY DIRECTOR

• Amber Salter, Ph.D.

  University of Texas Southwestern Medical Center

  PRINCIPAL INVESTIGATOR

• Gary R Cutter, Ph.D.

  University of Alabama at Birmingham

  STUDY DIRECTOR

• Ruth Ann Marrie, M.D., Ph.D.

  Dalhousie University

  STUDY DIRECTOR

Central Study Contacts

NARCOMS Team

CONTACT

1-214-648-4583; MSregistry@narcoms.org

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Target Duration: 10 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: November 19, 2009
• First Posted: November 23, 2009
• Study Start: January 1, 1996
• Primary Completion (Estimated): December 1, 2050
• Study Completion (Estimated): December 1, 2050
• Last Updated: November 13, 2025

Record last verified: 2025-11

Locations

US (1)