Maelstrom Research Staging

North American Research Committee on Multiple Sclerosis Registry

Networks -

Datasets -

Variables -

Start Year: 1996
Supplementary Information: The following is the link to the list of the NARCOMS publications: https://www.ncbi.nlm.nih.gov/myncbi/1pqyrIe3kbgQ7/bibliography/public/

Visit NARCOMS

Add to cart

Members

Download

Investigators	Contacts
Dr. Robert Fox Cleveland Clinic Robert Fox Title Dr. Name Robert Fox Email foxr@ccf.org Phone +1 216 444 8053 Institution Cleveland Clinic Address 9500 Euclid Avenue Cleveland United States of America Dr. Ruth Ann Marrie University of Manitoba Ruth Ann Marrie Title Dr. Name Ruth Ann Marrie Email rmarrie@hsc.mb.ca Phone +1 204 787 4951 Institution University of Manitoba Department Internal Medicine (Neurology) Address 820 Sherbrook Street Winnipeg Canada Dr. Amber Salter UT Southwestern Amber Salter Title Dr. Name Amber Salter Email Amber.Salter@utsouthwestern.edu Phone +1 314 362 3587 Institution UT Southwestern Department Medical center Address 5323 Harry Hines Blvd. Dallas United States of America Dr. Gary Cutter University of Alabama at Birmingham Gary Cutter Title Dr. Name Gary Cutter Email cutterg@uab.edu Phone +1 205 975 5048 Institution University of Alabama at Birmingham Address 1665 University Boulevard Birmingham United States of America	Dr. Douglas Menendez NARCOMS Coordinating Center Dr. Douglas Menendez Name Dr. Douglas Menendez Email MSregistry@narcoms.org Phone +1 800 253 7884 Institution NARCOMS Coordinating Center Address 660 S. Euclid Ave. St. Louis United States of America

Investigators

Contacts

Dr. Robert Fox
Cleveland Clinic

Robert Fox

Title

Dr.

Name

Robert Fox

Email

foxr@ccf.org

Phone

+1 216 444 8053

Institution

Cleveland Clinic

Address

9500 Euclid Avenue Cleveland United States of America
Dr. Ruth Ann Marrie
University of Manitoba

Ruth Ann Marrie

Title

Dr.

Name

Ruth Ann Marrie

Email

rmarrie@hsc.mb.ca

Phone

+1 204 787 4951

Institution

University of Manitoba

Department

Internal Medicine (Neurology)

Address

820 Sherbrook Street Winnipeg Canada
Dr. Amber Salter
UT Southwestern

Amber Salter

Title

Dr.

Name

Amber Salter

Email

Amber.Salter@utsouthwestern.edu

Phone

+1 314 362 3587

Institution

UT Southwestern

Department

Medical center

Address

5323 Harry Hines Blvd. Dallas United States of America
Dr. Gary Cutter
University of Alabama at Birmingham

Gary Cutter

Title

Dr.

Name

Gary Cutter

Email

cutterg@uab.edu

Phone

+1 205 975 5048

Institution

University of Alabama at Birmingham

Address

1665 University Boulevard Birmingham United States of America

Dr. Douglas Menendez
NARCOMS Coordinating Center

Dr. Douglas Menendez

Name

Dr. Douglas Menendez

Email

MSregistry@narcoms.org

Phone

+1 800 253 7884

Institution

NARCOMS Coordinating Center

Address

660 S. Euclid Ave. St. Louis United States of America

Design

Study design: Registry
Follow Up: After enrolling, participants are asked to complete update surveys semi-annually.
Supplementary Information: Longitudinal disease registry.

Marker Paper

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

Recruitment

Recruitment Target

Individuals

Number of Participants

Number of Participants: 42,000
Number of Participants with Biological Samples
Supplementary Information

Access

General Information

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other

Yes

Not applicable

Don't know

Timeline

NARCOMS population

Selection Criteria

Minimum age

Newborns

Twins

Countries

United States of America

Ethnic Origin

Health Status

Participants diagnosed with multiple sclerosis or clinically isolated syndrome

Recruitment

Sources of recruitment

General population
Specific population

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.

Number of Participants

Number of Participants: 42,000
Number of Participants with Biological Samples
Supplementary Information about selection criteria: The number of active participants is over 7,000.

Data Collection Events

#	Name	Description	Start	End
0	NARCOMS - Enrollment NARCOMS - Enrollment Start Date 1996 Data sources Questionnaires Files No files could be found.	Enrollment by participants is complete with submission of the enrollment survey. Information was collected about demographics (ethnicity, education, age, etc.), lifestyle, quality of ...	1996
1	NARCOMS - Follow-up 1 NARCOMS - Follow-up 1 Start Date 2000-04 End Date 2000-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2000-04	2000-06
2	NARCOMS - Follow-up 2 NARCOMS - Follow-up 2 Start Date 2000-10 End Date 2000-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2000-10	2000-12
3	NARCOMS - Follow-up 3 NARCOMS - Follow-up 3 Start Date 2001-04 End Date 2001-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2001-04	2001-06
4	NARCOMS - Follow-up 4 NARCOMS - Follow-up 4 Start Date 2001-10 End Date 2001-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2001-10	2001-12
5	NARCOMS - Follow-up 5 NARCOMS - Follow-up 5 Start Date 2002-04 End Date 2002-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2002-04	2002-06
6	NARCOMS - Follow-up 6 NARCOMS - Follow-up 6 Start Date 2002-10 End Date 2002-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2002-10	2002-12
7	NARCOMS - Follow-up 7 NARCOMS - Follow-up 7 Start Date 2003-04 End Date 2003-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2003-04	2003-06
8	NARCOMS - Follow-up 8 NARCOMS - Follow-up 8 Start Date 2003-10 End Date 2003-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2003-10	2003-12
9	NARCOMS - Follow-up 9 NARCOMS - Follow-up 9 Start Date 2004-04 End Date 2004-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2004-04	2004-06
10	NARCOMS - Follow-up 10 NARCOMS - Follow-up 10 Start Date 2004-10 End Date 2004-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2004-10	2004-12
11	NARCOMS - Follow-up 11 NARCOMS - Follow-up 11 Start Date 2005-04 End Date 2005-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2005-04	2005-06
12	NARCOMS - Follow-up 12 NARCOMS - Follow-up 12 Start Date 2005-10 End Date 2005-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2005-10	2005-12
13	NARCOMS - Follow-up 13 NARCOMS - Follow-up 13 Start Date 2006-04 End Date 2006-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2006-04	2006-06
14	NARCOMS - Follow-up 14 NARCOMS - Follow-up 14 Start Date 2006-10 End Date 2006-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2006-10	2006-12
15	NARCOMS - Follow-up 15 NARCOMS - Follow-up 15 Start Date 2007-04 End Date 2007-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2007-04	2007-06
16	NARCOMS - Follow-up 16 NARCOMS - Follow-up 16 Start Date 2007-10 End Date 2007-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2007-10	2007-12
17	NARCOMS - Follow-up 17 NARCOMS - Follow-up 17 Start Date 2008-04 End Date 2008-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2008-04	2008-06
18	NARCOMS - Follow-up 18 NARCOMS - Follow-up 18 Start Date 2008-10 End Date 2008-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2008-10	2008-12
19	NARCOMS - Follow-up 19 NARCOMS - Follow-up 19 Start Date 2009-04 End Date 2009-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2009-04	2009-06
20	NARCOMS - Follow-up 20 NARCOMS - Follow-up 20 Start Date 2009-10 End Date 2009-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2009-10	2009-12
21	NARCOMS - Follow-up 21 NARCOMS - Follow-up 21 Start Date 2010-04 End Date 2010-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2010-04	2010-06
22	NARCOMS - Follow-up 22 NARCOMS - Follow-up 22 Start Date 2010-10 End Date 2010-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2010-10	2010-12
23	NARCOMS - Follow-up 23 NARCOMS - Follow-up 23 Start Date 2011-04 End Date 2011-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2011-04	2011-06
24	NARCOMS - Follow-up 24 NARCOMS - Follow-up 24 Start Date 2011-10 End Date 2011-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2011-10	2011-12
25	NARCOMS - Follow-up 25 NARCOMS - Follow-up 25 Start Date 2012-04 End Date 2012-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2012-04	2012-06
26	NARCOMS - Follow-up 26 NARCOMS - Follow-up 26 Start Date 2012-10 End Date 2012-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2012-10	2012-12
27	NARCOMS - Follow-up 27 NARCOMS - Follow-up 27 Start Date 2013-04 End Date 2013-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2013-04	2013-06
28	NARCOMS - Follow-up 28 NARCOMS - Follow-up 28 Start Date 2013-10 End Date 2013-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2013-10	2013-12
29	NARCOMS - Follow-up 29 NARCOMS - Follow-up 29 Start Date 2014-04 End Date 2014-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2014-04	2014-06
30	NARCOMS - Follow-up 30 NARCOMS - Follow-up 30 Start Date 2014-10 End Date 2014-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2014-10	2014-12
31	NARCOMS - Follow-up 31 NARCOMS - Follow-up 31 Start Date 2015-04 End Date 2015-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2015-04	2015-06
32	NARCOMS - Follow-up 32 NARCOMS - Follow-up 32 Start Date 2015-10 End Date 2015-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2015-10	2015-12
33	NARCOMS - Follow-up 33 NARCOMS - Follow-up 33 Start Date 2016-04 End Date 2016-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2016-04	2016-06
34	NARCOMS - Follow-up 34 NARCOMS - Follow-up 34 Start Date 2016-10 End Date 2016-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2016-10	2016-12
35	NARCOMS - Follow-up 35 NARCOMS - Follow-up 35 Start Date 2017-04 End Date 2017-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2017-04	2017-06
36	NARCOMS - Follow-up 36 NARCOMS - Follow-up 36 Start Date 2017-10 End Date 2017-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2017-10	2017-12
37	NARCOMS - Follow-up 37 NARCOMS - Follow-up 37 Start Date 2018-04 End Date 2018-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2018-04	2018-06
38	NARCOMS - Follow-up 38 NARCOMS - Follow-up 38 Start Date 2018-10 End Date 2018-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2018-10	2018-12
39	NARCOMS - Follow-up 39 NARCOMS - Follow-up 39 Start Date 2019-04 End Date 2019-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2019-04	2019-06
40	NARCOMS - Follow-up 40 NARCOMS - Follow-up 40 Start Date 2019-10 End Date 2019-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2019-10	2019-12
41	NARCOMS - Follow-up 41 NARCOMS - Follow-up 41 Start Date 2020-04 End Date 2020-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2020-04	2020-06
42	NARCOMS - Follow-up 42 NARCOMS - Follow-up 42 Start Date 2020-10 End Date 2020-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2020-10	2020-12
43	NARCOMS - Follow-up 43 NARCOMS - Follow-up 43 Start Date 2021-04 End Date 2021-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2021-04	2021-06
44	NARCOMS - Follow-up 44 NARCOMS - Follow-up 44 Start Date 2021-10 End Date 2021-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2021-10	2021-12
45	NARCOMS - Follow-up 45 NARCOMS - Follow-up 45 Start Date 2022-04 End Date 2022-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2022-04	2022-06
46	NARCOMS - Follow-up 46 NARCOMS - Follow-up 46 Start Date 2022-10 End Date 2022-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2022-10	2022-12
47	NARCOMS - Follow-up 47 NARCOMS - Follow-up 47 Start Date 2023-04 End Date 2023-06 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2023-04	2023-06
48	NARCOMS - Follow-up 48 NARCOMS - Follow-up 48 Start Date 2023-10 End Date 2023-12 Data sources Questionnaires Files No files could be found.	Information was collected to update information on demographics (insurance, employment, disability, etc.), functionality, quality of life, other conditions, providers, relapse and symptom ...	2023-10	2023-12

Classifications

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

Cognitive functioning
Personality
Psychological distress and emotions
Other psychological measures and assessments

Perception of health
Quality of life
Life course development
Functional limitations
Other perception of health, quality of life and functional limitation-related information

Socio-demographic and economic characteristics

Age/birthdate

Sex/gender

Twin

Marital/partner status

Family and household structure

Education

Residence

Birthplace

Ethnicity, race and religion

Language

Labour force and retirement

Income, possessions, and benefits

Lifestyle and behaviours

Tobacco

Alcohol

Drugs

Nutrition

Physical activity

Transportation

Sleep

Sexual behaviours and orientation

Leisure activities

Technological devices

Other and unspecified lifestyle information

Birth, pregnancy and reproductive health history

Puberty, menstruation, menopause and andropause

Pregnancy, delivery and birth

Fertility and sexual health

Other reproductive health-related information

Perception of health, quality of life, development and functional limitations

Perception of health

Quality of life

Functional limitations

Use of assistive devices

Other perception of health, quality of life and functional limitation-related information

Diseases

Certain infectious and parasitic diseases (A00-B99)

Neoplasms (C00-D48)

Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism (D50-D89)

Endocrine, nutritional and metabolic diseases (E00-E90)

Mental and behavioural disorders (F00-F99)

Diseases of the nervous system (G00-G99)

Diseases of the eye and adnexa (H00-H59)

Diseases of the circulatory system (I00-I99)

Diseases of the respiratory system (J00-J99)

Diseases of the digestive system (K00-K93)

Diseases of the skin and subcutaneous tissue (L00-L99)

Diseases of the musculoskeletal system and connective tissue (M00-M99)

Diseases of the genitourinary system (N00-N99)

Injury, poisoning and certain other consequences of external causes (S00-T98)

Diseases without precise specification or falling into multiple categories

Symptoms and signs

Symptoms and signs involving the circulatory and respiratory systems (R00-R09)

Symptoms and signs involving the digestive system and abdomen (R10-R19)

Symptoms and signs involving the skin and subcutaneous tissue (R20-R23)

Symptoms and signs involving nervous and musculoskeletal systems (R25-R29)

Symptoms and signs involving the urinary system (R30-R39)

Symptoms and signs involving cognition, perception, emotional state and behaviour (R40-R46)

General symptoms and signs (R50-R69)

Symptoms related to multiple categories

Medication and supplements

Medication and supplement intake

Posology and protocol of administration

Other and unspecified pharmacological interventions

Non-pharmacological interventions

Surgical interventions

Radiological interventions

Cognitive, psychological and sensory interventions

Educational and health promotion interventions

Laboratory diagnosis interventions

Other and unspecified non-pharmacological interventions

Health and community care services utilization

Visits to health professionals

Hospitalizations

Community and social care

Other health and community care

Physical measures and assessments

Physical characteristics

Anthropometry

Brain and nerves

Laboratory measures

Virology

Cognition, personality and psychological measures and assessments

Cognitive functioning

Personality

Psychological distress and emotions

Other psychological measures and assessments

Life events, life plans, beliefs and values

Beliefs and values

Preschool, school and work life

Work life

Social environment and relationships

Social participation

Social support

Other social environment characteristics

Physical environment

Chemical exposure

Administrative information

Identifiers

Date and time-related information

Questionnaire and interview-related information

Physical and cognitive measure and biosample-related information

Data and sample collection center-related information

Other administrative information

Psychological distress and emotions

Center for Epidemiological Studies Depression Scale

Other psychological measures and assessments

Planned Behaviour in MS

Quality of life

Dizziness Handicap Inventory

Health Utilities Index

Modified Fatigue Impact Scale

Multiple Sclerosis Impact Scale

Patient-Reported Outcomes Measurement Information System (Fatigue)

Short-Form 12 Health Survey

Functional limitations

Instrumental Activities of Daily Living

Patient-determined Disease Steps

Performance Scales

Other perception of health, quality of life and functional limitation-related information

Medical Term Recognition Test

Individual Study / NARCOMS

North American Research Committee on Multiple Sclerosis Registry

Members

Design

Marker Paper

Recruitment

Number of Participants

Access

Timeline

NARCOMS population

Selection Criteria

Recruitment

Number of Participants

Files

Data Collection Events

Files

Classifications

Variables Classifications

Individual Study / NARCOMS

North American Research Committee on Multiple Sclerosis Registry

Members

Robert Fox

Ruth Ann Marrie

Amber Salter

Gary Cutter

Dr. Douglas Menendez

Design

Marker Paper

Recruitment

Number of Participants

Access

Timeline

NARCOMS population

Selection Criteria

Recruitment

Number of Participants

Files

Data Collection Events

NARCOMS - Enrollment

NARCOMS - Follow-up 1

NARCOMS - Follow-up 2

NARCOMS - Follow-up 3

NARCOMS - Follow-up 4

NARCOMS - Follow-up 5

NARCOMS - Follow-up 6

NARCOMS - Follow-up 7

NARCOMS - Follow-up 8

NARCOMS - Follow-up 9

NARCOMS - Follow-up 10

NARCOMS - Follow-up 11

NARCOMS - Follow-up 12

NARCOMS - Follow-up 13

NARCOMS - Follow-up 14

NARCOMS - Follow-up 15

NARCOMS - Follow-up 16

NARCOMS - Follow-up 17

NARCOMS - Follow-up 18

NARCOMS - Follow-up 19

NARCOMS - Follow-up 20

NARCOMS - Follow-up 21

NARCOMS - Follow-up 22

NARCOMS - Follow-up 23

NARCOMS - Follow-up 24

NARCOMS - Follow-up 25

NARCOMS - Follow-up 26

NARCOMS - Follow-up 27

NARCOMS - Follow-up 28

NARCOMS - Follow-up 29

NARCOMS - Follow-up 30

NARCOMS - Follow-up 31

NARCOMS - Follow-up 32

NARCOMS - Follow-up 33

NARCOMS - Follow-up 34

NARCOMS - Follow-up 35

NARCOMS - Follow-up 36

NARCOMS - Follow-up 37

NARCOMS - Follow-up 38

NARCOMS - Follow-up 39

NARCOMS - Follow-up 40

NARCOMS - Follow-up 41

NARCOMS - Follow-up 42

NARCOMS - Follow-up 43

NARCOMS - Follow-up 44

NARCOMS - Follow-up 45

NARCOMS - Follow-up 46

NARCOMS - Follow-up 47

NARCOMS - Follow-up 48

Files

Classifications

Variables Classifications