Manitoba Multiple Sclerosis Clinic Database and Registry
The general objectives of the Manitoba Multiple Sclerosis Clinic Database and Registry are to:
* Establish a clinical database for patients followed at the Health Sciences Centre (HSC) Multiple Sclerosis (MS) Clinic, to facilitate patient care.
* Conduct epidemiologic and health services research – including descriptive, etiologic, and prognostic studies.
* Establish a registry of patients who are willing to be contacted for research purposes.
Potential areas of investigation include, but are not limited to:
* Prognostic factors for the development of MS after presentation with a clinically isolated syndrome, such as optic neuritis or transverse myelitis.
* Prognostic factors for disability progression.
* Frequency of comorbidity in MS, and its impact on a range of health outcomes.
* Frequency of secondary conditions in MS such as neurogenic bladder, osteoporosis, and deep venous thrombosis.
* Factors influencing employment status.
* Healthcare utilization patterns include the frequency and periodicity of specialist visits, diagnostic procedures, use of allied health services such as physical therapy, and hospitalizations.
Overview
- Acronym
- MSCDR
- Investigators
-
- Contacts
-
General Design
- Study design
- Registry
- Start - End Year
- 2010 -
- General Information on Follow Up (profile, frequency)
-
Participants are followed once 12 months after their first visit.
- Recruitment Target
-
- Individuals
- Number of Participants
- No Limit
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
|
https://umanitoba.ca/manitoba-centre-for-health-policy/data-repository#data-list-and-data-descriptions
Timeline
Population
MSCDR population
The population is composed of patients seen for clinical evaluation of MS at the HSC MS Clinic, regardless of diagnosis.
Selection Criteria
- Countries
-
- Canada
- Canadian Provinces
-
- Manitoba
- Other Criteria
-
Patients are included in the database without the regard to race, sex, socioeconomic status, or pregnancy status
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Supplementary Information
-
Patients are recruited from the Multiple Sclerosis Clinic at the Health Sciences Centre in Manitoba, Canada.
Sample Size
- Number of Participants
- No Limit
- Supplementary information about number of participants
-
Approximately 2000 participants are evaluated from the database every 12 months as part of routine clinical care.
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | MSCDR - Data Capture |
|
2010 | Ongoing | |
| 1 | MSCDR - Follow-up 12 months |
|
2011 | 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: 2024-03-18T13:52:25.885