North American Research Committee on Multiple Sclerosis Registry

Overview

Acronym
NARCOMS
Website
NARCOMS
Investigators
  • Dr. Robert Fox
    Cleveland Clinic
  • Dr. Ruth Ann Marrie
    University of Manitoba
  • Dr. Amber Salter
    Washington University in St. Louis
  • Dr. Gary Cutter
    University of Alabama at Birmingham
Contacts
  • Michele Curran
    NARCOMS Coordinating Center

General Design

Study design
Registry
Start Year
1996
General Information on Follow Up (profile, frequency)
After enrolling, participants are asked to complete update surveys semi-annually.
Recruitment Target
  • Individuals
Number of Participants
41,000
Supplementary information about number of participants
The number of active participants is over 10,000.
Supplementary Information
Longitudinal disease registry

Access

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other

Marker Paper

Marrie RA, Cutter G, Tyry T, Campagnolo D, Vollmer T. 2007. Validation of the NARCOMS registry: diagnosis. Mult Scler 13(6):770-5

PUBMED 17525097

Supplementary Information

The following is the link to the list of the NARCOMS publications: https://www.ncbi.nlm.nih.gov/myncbi/1pqyrIe3kbgQ7/bibliography/public/

Timeline

Population

NARCOMS population

Selection Criteria

Minimum age
18
Health Status
  • Participants diagnosed with multiple sclerosis or clinically isolated syndrome

Sources of Recruitment

General Population
  • Volunteer enrolment
Specific Population
  • Other specific population : Members of the National Multiple Sclerosis Society (NMSS), Consortium of Multiple Sclerosis Centers (CMSC), Paralyzed Veterans of American (PVA), and Eastern Paralyzed Veterans Association (EPVA)
Supplementary Information
Multiple Sclerosis (MS) patients are contacted directly by using mailing lists provided by the various Consortium of Multiple Sclerosis Centers (CMSC), as well as the National Multiple Sclerosis Society (NMSS) mailing list. Potential Registry participants are also reached through publications of the NMSS, Paralyzed Veterans of American (PVA), and Eastern Paralyzed Veterans Association (EPVA). Registry information is available on the CMSC website , and interested individuals can download a copy of the enrollment questionnaire. Many MS support groups also distribute enrollment questionnaires to their members.

Sample Size

Number of Participants
41,000
Supplementary Information
The number of active participants is over 10,000.

Data Collection Events

# Name Description Start End
0 NARCOMS - Enrollment 1996 Ongoing
1 NARCOMS - Follow-up 1 2000 (April) 2000 (June)
2 NARCOMS - Follow-up 2 2000 (October) 2000 (December)
3 NARCOMS - Follow-up 3 2001 (April) 2001 (June)
4 NARCOMS - Follow-up 4 2001 (October) 2001 (December)
5 NARCOMS - Follow-up 5 2002 (April) 2002 (June)
6 NARCOMS - Follow-up 6 2002 (October) 2002 (December)
7 NARCOMS - Follow-up 7 2003 (April) 2003 (June)
8 NARCOMS - Follow-up 8 2003 (October) 2003 (December)
9 NARCOMS - Follow-up 9 2004 (April) 2004 (June)
10 NARCOMS - Follow-up 10 2004 (October) 2004 (December)
11 NARCOMS - Follow-up 11 2005 (April) 2005 (June)
12 NARCOMS - Follow-up 12 2005 (October) 2005 (December)
13 NARCOMS - Follow-up 13 2006 (April) 2006 (June)
14 NARCOMS - Follow-up 14 2006 (October) 2006 (December)
15 NARCOMS - Follow-up 15 2007 (April) 2007 (June)
16 NARCOMS - Follow-up 16 2007 (October) 2007 (December)
17 NARCOMS - Follow-up 17 2008 (April) 2008 (June)
18 NARCOMS - Follow-up 18 2008 (October) 2008 (December)
19 NARCOMS - Follow-up 19 2009 (April) 2009 (June)
20 NARCOMS - Follow-up 20 2009 (October) 2009 (December)
21 NARCOMS - Follow-up 21 2010 (April) 2010 (June)
22 NARCOMS - Follow-up 22 2010 (October) 2010 (December)
23 NARCOMS - Follow-up 23 2011 (April) 2011 (June)
24 NARCOMS - Follow-up 24 2011 (October) 2011 (December)
25 NARCOMS - Follow-up 25 2012 (April) 2012 (June)
26 NARCOMS - Follow-up 26 2012 (October) 2012 (December)
27 NARCOMS - Follow-up 27 2013 (April) 2013 (June)
28 NARCOMS - Follow-up 28 2013 (October) 2013 (December)
29 NARCOMS - Follow-up 29 2014 (April) 2014 (June)
30 NARCOMS - Follow-up 30 2014 (October) 2014 (December)
31 NARCOMS - Follow-up 31 2015 (April) 2015 (June)
32 NARCOMS - Follow-up 32 2015 (October) 2015 (December)
33 NARCOMS - Follow-up 33 2016 (April) 2016 (June)
34 NARCOMS - Follow-up 34 2016 (October) 2016 (December)
35 NARCOMS - Follow-up 35 2017 (April) 2017 (June)
36 NARCOMS - Follow-up 36 2017 (October) 2017 (December)
37 NARCOMS - Follow-up 37 2018 (April) 2018 (June)
38 NARCOMS - Follow-up 38 2018 (October) 2018 (December)
39 NARCOMS - Follow-up 39 2019 (April) 2019 (June)
40 NARCOMS - Follow-up 40 2019 (October) 2019 (December)
41 NARCOMS - Follow-up 41 2020 (April) 2020 (June)
42 NARCOMS - Follow-up 42 2020 (October) 2020 (December)

Individual Studies Included

Acronym Name Study design Participants Countries

Harmonization Projects Included

Acronym Name

Networks

Acronym Name Studies

Datasets

Name Type Data Collection Events Variables
Last Update: 2021-01-25 16:24