NARCOMS Registry: A Multiple Sclerosis Registry

Multiple Sclerosis Clinical Trial

— NARCOMS  

Official title:

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

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT01018537
• Other study ID #: 20081794
• Status: Recruiting
• Start date: January 1996
• Est. completion date: December 2050

Study information

• Verified date: November 2023
• Source: University of Texas Southwestern Medical Center
• Contact: NARCOMS Team
• Phone: 1-214-648-4583
• Email: MSregistry[@]narcoms.org
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical 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. 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.

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 University of Manitoba in Canada). Over the past 20 years more than 41,000 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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 50000
• Est. completion date: December 2050
• Est. primary completion date: December 2050
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Multiple Sclerosis
• Sclerosis

Locations

Country	Name	City	State
United States	UT Southwestern Medical Center	Dallas	Texas

Sponsors (2)

Lead Sponsor	Collaborator
University of Texas Southwestern Medical Center	Consortium of Multiple Sclerosis Centers

Country where clinical trial is conducted

United States, 

References & Publications (41)

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

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. — View Citation

* Note: There are 41 references in all — Click here to view all references

Outcome

Type	Measure	Description	Time frame	Safety issue
Other	Medication usage in multiple sclerosis	Disease modifying therapy use is collected from participants	up to 15 years
Primary	Disease progression over time of follow up	Disease Progression measured using the Patient Determined Disease Steps	up to 15 years
Secondary	Contributing factors to change in MS disease status	Factors include, but not limited to, demographics, lifestyle and clinical characteristics	up to 15 years

External Links

•   NARCOMS homepage where you can get more information or enroll in the registry.
•   NARCOMS PubMed Bibliography