North American Registry for Care and Research in Multiple Sclerosis
- Start Year
- 2016
- 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.
Visit NARCRMS
| Investigators | Contacts |
|---|---|
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Design
- Study design
- Registry
- Follow Up
- Follow-ups are conducted once yearly.
Marker Paper
Recruitment
- Recruitment Target
-
- Individuals
Number of Participants
- Number of Participants
- 712
- Number of Participants with Biological Samples
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Timeline
NARCRMS population
Selection Criteria
- Minimum age
-
18
- Maximum age
-
65
- Newborns
- Twins
- Countries
-
- United States of America
- Canada
- Ethnic Origin
-
- 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
Recruitment
- Sources of recruitment
-
- Specific population
- Specific Population
-
- Clinic patients
- Supplementary Information
-
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.
Number of Participants
- Number of Participants
- 712
- Number of Participants with Biological Samples
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
NARCRMS - Enrollment
|
Information is collected by physicians, patient-reported and from medical records. At enrollment, a disability is assessed through the score of Expanded Disability Status Scale (EDSS). ... |
2016-05 | |
| 1 |
NARCRMS - Follow-up 1
|
Information is collected by physicians, patient-reported and from medical records. Participants complete Case Report Forms (CRFs) which include the health-related productivity and ... |
2017-05 | 2018-04 |
| 2 |
NARCRMS - Follow-up 2
|
Information is collected by physicians, patient-reported and from medical records. Participants complete Case Report Forms (CRFs) which include the health-related productivity and ... |
2018-05 | 2019-04 |
| 3 |
NARCRMS - Follow-up 3
|
Information is collected by physicians, patient-reported and from medical records. Participants complete Case Report Forms (CRFs) which include the health-related productivity and ... |
2019-05 |
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
Lifestyle and behaviours
Birth, pregnancy and reproductive health history
Perception of health, quality of life, development and functional limitations
Diseases
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
Social environment and relationships
Physical environment
Administrative information
Cognitive functioning
Functional limitations