Multiple Sclerosis Metadata Collective: A Collaborative Effort of North American Observational Studies in Multiple Sclerosis
Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system characterized by relapses, as well as heterogeneous progression of physical and cognitive impairments. Observational studies, including registries and cohort studies, capture information about the disease and other health-related information. These studies have different objectives, different methods of data collection and have the capability of assessing long-term disability progression and other disease-related changes. The standardized description of these studies is critical to increase collaborations and harmonizing across registries.
This project aims to create a resource for MS studies and build a foundation for widespread harmonization efforts in observational studies focused on MS.
Overview
- Acronym
- MSMDC
- Investigators
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- Contacts
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Harmonization Initiatives
| Acronym | Name | Variables |
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Summary Statistics
Individual Studies
| Acronym | Name | Study design | Countries | Variables |
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Participating Networks
| Acronym | Name | Harmonization Initiatives | Individual Studies |
|---|
Areas of Information Collected
- Socio-demographic and economic characteristics 15
- Death 6
- Lifestyle and behaviours 12
- Physical measures and assessments 10
- Birth, pregnancy and reproductive health history 6
- Laboratory measures 8
- Perception of health, quality of life, development and functional limitations 13
- Cognition, personality and psychological measures and assessments 9
- Diseases 15
- Life events, life plans, beliefs and values 5
- Symptoms and signs 8
- Preschool, school and work life 5
- Medication and supplements 15
- Social environment and relationships 4
- Non-pharmacological interventions 12
- Physical environment 7
- Health and community care services utilization 9
- Administrative information 15