North American Research Committee on Multiple Sclerosis Registry
The objectives of the registry are to:
- Facilitate a confidential way for patients to supply valuable information to researchers about their course of disease that may lead to more effective treatments and care for people living with MS, while reducing the time and cost of conducting studies.
- Provide a worldwide research resource for people living with multiple sclerosis so they can benefit from the knowledge gained and share in it as soon as it becomes available.
- Develop new collaborations between researchers, patients, and healthcare providers to increase knowledge of effective treatments, the amount of peer reviewed publications, and the quality of healthcare services, raise awareness and understanding of MS, and to create a computerized database representing at least 10% of the MS population in the US that tracks changes over time and is updated with semi-annual participant surveys.
Overview
- Acronym
- NARCOMS
- Website
- NARCOMS
- Investigators
-
- Contacts
-
General Design
- Study design
- Registry
- Start - End 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
- 42,000
- Supplementary Information
-
Longitudinal disease registry.
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 17525097Marrie 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 35035299Supplementary 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
The population is composed of people 18 years or older, who have been diagnosed with multiple sclerosis.
Selection Criteria
- Minimum age
-
18
- Countries
-
- United States of America
- 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
- 42,000
- Supplementary Information about selection criteria
-
The number of active participants is over 7,000.
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | 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) | |
| 43 | NARCOMS - Follow-up 43 |
|
2021 (April) | 2021 (June) | |
| 44 | NARCOMS - Follow-up 44 |
|
2021 (October) | 2021 (December) | |
| 45 | NARCOMS - Follow-up 45 |
|
2022 (April) | 2022 (June) | |
| 46 | NARCOMS - Follow-up 46 |
|
2022 (October) | 2022 (December) | |
| 47 | NARCOMS - Follow-up 47 |
|
2023 (April) | 2023 (June) | |
| 48 | NARCOMS - Follow-up 48 |
|
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