Individual Study / MSSR

Veterans Affairs Multiple Sclerosis Surveillance Registry

Veterans Affairs Multiple Sclerosis Surveillance Registry

MSSR logo
Networks -
Datasets -
Variables -
Start Year
2015
Visit MSSR

Members

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Investigators Contacts
  • Dr. Mitchell Wallin
    Multiple Sclerosis Center of Excellence and George Washington University
  • Dr. Joel Culpepper
    University of Maryland
  • Dr. Mitchell Wallin
    Multiple Sclerosis Center of Excellence and George Washington University
  • Dr. Joel Culpepper
    University of Maryland

Design

Study design
Registry
Follow Up
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.

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).

PUBMED

Recruitment

Recruitment Target
  • Individuals

Number of Participants

Number of Participants
1,900
Number of Participants with Biological Samples

Access

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other

Availability of access information

By contacting the study representative

Timeline

MSSR population

Selection Criteria
Minimum age
18
Newborns
Twins
Countries
  • United States of America
Ethnic Origin
Health Status
  • Multiple Sclerosis or related disorder (RIS, CIS, NMO)
Other Criteria
Must be a veteran.
Supplementary Information about selection criteria
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.

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Other specific population : US Veterans
Supplementary Information
Multiple Sclerosis cases were identified by a statistical algorithm and stratified proportionally by geographic region.

Number of Participants

Number of Participants
1,900
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 MSSR - Baseline

Information was collected directly through a survey from patients, as well as from clinicians through the Multiple Sclerosis Assessment Tool (MSAT), Veterans AffairsCorporate Data Warehouse ...

2015-05 2016-04
1 MSSR - Follow-up 1

Information was collected directly through a survey from patients, as well as from clinicians through the Multiple Sclerosis Assessment Tool (MSAT), Veterans AffairsCorporate Data Warehouse ...

2016-05 2017-04
2 MSSR - Follow-up 2

Information was collected directly through a survey from patients, as well as from clinicians through the Multiple Sclerosis Assessment Tool (MSAT), Veterans AffairsCorporate Data Warehouse ...

2017-05 2018-04
3 MSSR - Follow-up 3

Information was collected directly through a survey from patients, as well as from clinicians through the Multiple Sclerosis Assessment Tool (MSAT), Veterans AffairsCorporate Data Warehouse ...

2018-05 2019-04
4 MSSR - Follow-up 4

Information was collected directly through a survey from patients, as well as from clinicians through the Multiple Sclerosis Assessment Tool (MSAT), Veterans AffairsCorporate Data Warehouse ...

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

Socio-demographic and economic characteristics

Sex/gender
Ethnicity, race and religion
Income, possessions, and benefits

Diseases

Diseases of the nervous system (G00-G99)
Diseases without precise specification or falling into multiple categories

Symptoms and signs

Symptoms and signs involving nervous and musculoskeletal systems (R25-R29)

Medication and supplements

Medication and supplement intake
Posology and protocol of administration

Non-pharmacological interventions

Radiological interventions
Laboratory diagnosis interventions

Death

Vital status
Cause of death

Administrative information

Date and time-related information
Questionnaire and interview-related information
Other administrative information