Veterans Affairs Multiple Sclerosis Surveillance Registry
The purpose of the Multiple Sclerosis Surveillance Registry is to understand the unique characteristics and treatment patterns of veterans with multiple sclerosis in order to optimize their care in the Veterans Affairs system.Clinicians input MS-specific clinical data into the MSSR either through the MS Assessment Tool (MSAT) or from the web. Other data is automatically fed into the MSSR from existing databases. The MSSR allows MS clinics to view summary data charts of all their Veterans with MS, as well as summarize MS histories for individual patients
Overview
- Acronym
- MSSR
- Website
- MSSR
- Investigators
-
- Contacts
-
General Design
- Study design
- Registry
- Start - End Year
- 2015 -
- General Information on Follow Up (profile, frequency)
-
Timeline: The MSSR population consists of both new and old cases of MS who have been followed longitudinally in the VA and Department of Defense health care systems. Whether cases are entered at the time of diagnosis or retrospectively after the diagnosis is confirmed, all patients with MS are followed prospectively within the national VA health care system. Participants are followed up a minimum of once per year, as well as when a patient was seen for a relapse.
- Recruitment Target
-
- Individuals
- Number of Participants
- 1,900
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
- By contacting the study representative: Wallin Mitchell (VA Multiple Sclerosis Centers of Excellence (MSCoE))
Marker Paper
Wallin MT, Whitham R, Maloni H, Jin S, Duckart, Haselkorn J, Culpepper WJ. The Multiple Sclerosis Surveillance Registry: A Novel Interactive Database Within the Veterans Health Administration. Federal Practitioner 2020:(e-publication in press).
Timeline
Population
MSSR population
The population consists of veterans who were diagnosed with MS or a related disorder (Radiologically Isolated Syndrome (RIS), Clinically Isolated Syndrome (CIS), Neuromyelitis optica (NMO) who were 18 years old or older.
Selection Criteria
- Minimum age
-
18
- Countries
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- United States of America
- Health Status
-
- Multiple Sclerosis or related disorder (RIS, CIS, NMO)
- Other Criteria
- Must be a veteran.
- Supplementary Information about selection criteria
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Veterans were classified with multiple sclerosis by the McDonald criteria (2017 or most recent version) and NMO by the Wingerchuk, 2015 criteria. The MS statistical algorithm and military service-connection was used to generate case list for health care providers.
Sources of Recruitment
- Specific Population
-
- Other specific population : US Veterans
- Supplementary Information
-
Multiple Sclerosis cases were identified by a statistical algorithm and stratified proportionally by geographic region.
Sample Size
- Number of Participants
- 1,900
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | MSSR - Baseline |
|
2015 (May) | 2016 (April) | |
| 1 | MSSR - Follow-up 1 |
|
2016 (May) | 2017 (April) | |
| 2 | MSSR - Follow-up 2 |
|
2017 (May) | 2018 (April) | |
| 3 | MSSR - Follow-up 3 |
|
2018 (May) | 2019 (April) | |
| 4 | MSSR - Follow-up 4 |
|
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: 2020-06-29T11:47:28.598