North American Registry for Care and Research in Multiple Sclerosis
The objectives of NARCRMS are:
- Providing clinicians and researchers with a greater, more integrated ability to track the incidence, prevalence and longitudinal history of multiple sclerosis (MS).
- Improving the understanding of MS and facilitating care at every level, through information sharing.
- Collecting complete patient and physician data sets to track incidence, prevalence, and the longitudinal history of MS over time.
- Establishing a national registry and longitudinal database of clinical and patient-based information.
- Establishing “Cores” of repositories of clinical, genetic, and radiological data, and various biomaterials for developing biomarkers for this disorder across the United States.
- Developing “Research Interest Groups” (RIGS) from within the participating centers to promote collaborative efforts to utilize the data as they become available, to address specific unanswered questions in this disorder.
Overview
- Acronym
- NARCRMS
- Website
- NARCRMS
- Investigators
-
- Contacts
-
General Design
- Study design
- Registry
- Start - End Year
- 2016 -
- General Information on Follow Up (profile, frequency)
-
Follow-ups are conducted once yearly.
- Recruitment Target
-
- Individuals
- Number of Participants
- 712
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
|
Supplementary Information
1.https://n.neurology.org/content/90/15_Supplement/P4.407
2.Rammohan, K., Li, D., Halper, J., McCurdy Murphy, L., Patton, S. (2019, September). The North American registry for Care and Research in MS (NARCRMS). Department of Neurology, University of Miami. Miami, FL, United States.
Timeline
Population
NARCRMS population
The population consists of individuals aged 18 to 65 years old who have relapsing or progressive multiple sclerosis, with a clear date of onset within 15 years.
Selection Criteria
- Minimum age
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18
- Maximum age
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65
- Countries
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- United States of America
- Canada
- Health Status
-
- Inclusion: Participants must have relapsing or progressive multiple sclerosis with clear date of onset within 15 years and evidence of clinical isolated syndrome typical of demyelination.
Exclusion: Concomitant confounding disorders like neuromyelitis optica and idiopathic isolated transverse myelitis, and/or known autoimmune disorders that can cause neurological disorders.
- Inclusion: Participants must have relapsing or progressive multiple sclerosis with clear date of onset within 15 years and evidence of clinical isolated syndrome typical of demyelination.
- Other Criteria
- Inclusion: EDSS up to 6.5
Sources of Recruitment
- Specific Population
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- Clinic patients
- Supplementary Information
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Participants are recruited from approximately 25 to 27 enrollment sites chosen to geographically represent all regions across the U.S. and Canada. Recruitment sites include clinical sites and medical practices currently enrolled in the Consortium of Multiple Sclerosis Centers, as well as affiliated centers of the National Multiple Sclerosis Society.
Sample Size
- Number of Participants
- 712
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | NARCRMS - Enrollment |
|
|
2016 (May) | Ongoing |
| 1 | NARCRMS - Follow-up 1 |
|
|
2017 (May) | 2018 (April) |
| 2 | NARCRMS - Follow-up 2 |
|
|
2018 (May) | 2019 (April) |
| 3 | NARCRMS - Follow-up 3 |
|
|
2019 (May) | Ongoing |
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: 2020-09-30T18:54:54.163