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
UT Southwestern
Dr. Gary Cutter
University of Alabama at Birmingham
Contacts
Dr. Douglas Menendez
NARCOMS Coordinating Center

General Design

Study design
Registry
Start - End Year
1996 -
General Information on Follow Up (profile, frequency)
Recruitment Target
  • Individuals
Number of Participants
42,000
Supplementary Information

Access

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other

Marker Papers

Marrie RA, Cutter G, Tyry T, et al. 2007. Validation of the NARCOMS registry: diagnosis. Mult Scler. 2007 Jul;13(6):770-5.

PUBMED 17525097

Marrie RA, Cutter GR, Fox RJ, et al. NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights. Int J MS Care. 2021 Nov-Dec;23(6):276-284.

PUBMED 35035299

Supplementary Information

Timeline

Population

NARCOMS population

Selection Criteria

Minimum age
18
Countries
  • United States of America
Health Status

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

Sample Size

Number of Participants
42,000
Supplementary information about number of participants

Data Collection Events

# Name Data sources Data sources - Biosamples Start End
0 NARCOMS - Enrollment
  • Questionnaires
1996 Ongoing
1 NARCOMS - Follow-up 1
  • Questionnaires
2000 (April) 2000 (June)
2 NARCOMS - Follow-up 2
  • Questionnaires
2000 (October) 2000 (December)
3 NARCOMS - Follow-up 3
  • Questionnaires
2001 (April) 2001 (June)
4 NARCOMS - Follow-up 4
  • Questionnaires
2001 (October) 2001 (December)
5 NARCOMS - Follow-up 5
  • Questionnaires
2002 (April) 2002 (June)
6 NARCOMS - Follow-up 6
  • Questionnaires
2002 (October) 2002 (December)
7 NARCOMS - Follow-up 7
  • Questionnaires
2003 (April) 2003 (June)
8 NARCOMS - Follow-up 8
  • Questionnaires
2003 (October) 2003 (December)
9 NARCOMS - Follow-up 9
  • Questionnaires
2004 (April) 2004 (June)
10 NARCOMS - Follow-up 10
  • Questionnaires
2004 (October) 2004 (December)
11 NARCOMS - Follow-up 11
  • Questionnaires
2005 (April) 2005 (June)
12 NARCOMS - Follow-up 12
  • Questionnaires
2005 (October) 2005 (December)
13 NARCOMS - Follow-up 13
  • Questionnaires
2006 (April) 2006 (June)
14 NARCOMS - Follow-up 14
  • Questionnaires
2006 (October) 2006 (December)
15 NARCOMS - Follow-up 15
  • Questionnaires
2007 (April) 2007 (June)
16 NARCOMS - Follow-up 16
  • Questionnaires
2007 (October) 2007 (December)
17 NARCOMS - Follow-up 17
  • Questionnaires
2008 (April) 2008 (June)
18 NARCOMS - Follow-up 18
  • Questionnaires
2008 (October) 2008 (December)
19 NARCOMS - Follow-up 19
  • Questionnaires
2009 (April) 2009 (June)
20 NARCOMS - Follow-up 20
  • Questionnaires
2009 (October) 2009 (December)
21 NARCOMS - Follow-up 21
  • Questionnaires
2010 (April) 2010 (June)
22 NARCOMS - Follow-up 22
  • Questionnaires
2010 (October) 2010 (December)
23 NARCOMS - Follow-up 23
  • Questionnaires
2011 (April) 2011 (June)
24 NARCOMS - Follow-up 24
  • Questionnaires
2011 (October) 2011 (December)
25 NARCOMS - Follow-up 25
  • Questionnaires
2012 (April) 2012 (June)
26 NARCOMS - Follow-up 26
  • Questionnaires
2012 (October) 2012 (December)
27 NARCOMS - Follow-up 27
  • Questionnaires
2013 (April) 2013 (June)
28 NARCOMS - Follow-up 28
  • Questionnaires
2013 (October) 2013 (December)
29 NARCOMS - Follow-up 29
  • Questionnaires
2014 (April) 2014 (June)
30 NARCOMS - Follow-up 30
  • Questionnaires
2014 (October) 2014 (December)
31 NARCOMS - Follow-up 31
  • Questionnaires
2015 (April) 2015 (June)
32 NARCOMS - Follow-up 32
  • Questionnaires
2015 (October) 2015 (December)
33 NARCOMS - Follow-up 33
  • Questionnaires
2016 (April) 2016 (June)
34 NARCOMS - Follow-up 34
  • Questionnaires
2016 (October) 2016 (December)
35 NARCOMS - Follow-up 35
  • Questionnaires
2017 (April) 2017 (June)
36 NARCOMS - Follow-up 36
  • Questionnaires
2017 (October) 2017 (December)
37 NARCOMS - Follow-up 37
  • Questionnaires
2018 (April) 2018 (June)
38 NARCOMS - Follow-up 38
  • Questionnaires
2018 (October) 2018 (December)
39 NARCOMS - Follow-up 39
  • Questionnaires
2019 (April) 2019 (June)
40 NARCOMS - Follow-up 40
  • Questionnaires
2019 (October) 2019 (December)
41 NARCOMS - Follow-up 41
  • Questionnaires
2020 (April) 2020 (June)
42 NARCOMS - Follow-up 42
  • Questionnaires
2020 (October) 2020 (December)
43 NARCOMS - Follow-up 43
  • Questionnaires
2021 (April) 2021 (June)
44 NARCOMS - Follow-up 44
  • Questionnaires
2021 (October) 2021 (December)
45 NARCOMS - Follow-up 45
  • Questionnaires
2022 (April) 2022 (June)
46 NARCOMS - Follow-up 46
  • Questionnaires
2022 (October) 2022 (December)
47 NARCOMS - Follow-up 47
  • Questionnaires
2023 (April) 2023 (June)
48 NARCOMS - Follow-up 48
  • Questionnaires
2023 (October) 2023 (December)

Participating Studies

Acronym Name Study design Countries

Harmonization Initiatives Included

Acronym Name

Datasets

Name Data Collection Events Variables

Areas of Information Collected

Socio-demographic and economic characteristics
Death
Lifestyle and behaviours
Physical measures and assessments
Birth, pregnancy and reproductive health history
Laboratory measures
Perception of health, quality of life, development and functional limitations
Cognition, personality and psychological measures and assessments
Diseases
Life events, life plans, beliefs and values
Symptoms and signs
Preschool, school and work life
Medication and supplements
Social environment and relationships
Non-pharmacological interventions
Physical environment
Health and community care services utilization
Administrative information

Variables Content Summary

Areas of Information Collected
No Areas of Information Collected
No Scales Collected
Areas of Information Collected per per Population and Data Collection Event
No Areas of Information Collected
No Scales Collected

Networks

Acronym Name Harmonization Initiatives Individual Studies
Last Update: 2024-02-20T11:48:19.920