Individual Study / JHMS

Johns Hopkins Precision Medicine Center of Excellence for Multiple Sclerosis

Johns Hopkins Precision Medicine Center of Excellence for Multiple Sclerosis

Networks -
Datasets -
Variables -
Start Year
2017
Visit JHMS

Members

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Investigators Contacts
  • Dr. Peter Calabresi
    Johns Hopkins School of Medicine
  • Dr. Ellen Mowry
    John Hopkins School of Medicine
  • Dr. Kathryn Fitzgerald
    John Hopkins School of Medicine
  • Dr. Peter Calabresi
    Johns Hopkins School of Medicine
  • Dr. Kathryn Fitzgerald
    John Hopkins School of Medicine

Design

Study design
Registry
Follow Up
Participants are followed biannually.

Recruitment

Recruitment Target
  • Individuals

Number of Participants

Number of Participants
1,213
Number of Participants with Biological Samples

Access

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other

Timeline

JHMS population

Selection Criteria
Minimum age
18
Maximum age
65
Newborns
Twins
Countries
  • United States of America
Ethnic Origin
Health Status
  • Participants must be diagnosed with relapsing-remitting multiple sclerosis, progressive multiple sclerosis or clinically isolated syndrome.

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients

Number of Participants

Number of Participants
1,213
Number of Participants with Biological Samples
Data Collection Events
# Name Description Start End
0 JHMS - Enrollment

Clinical information, demographic data and general medical history is collected from questionnaires.

Optical coherence tomography imaging is performed to obtain peripapillary and ...

2017-03
1 JHMS - Follow-up 1

Clinical information, demographic data and general medical history is collected from questionnaires.

Optical coherence tomography imaging is performed to obtain peripapillary ...

2017-09 2018-02
2 JHMS - Follow-up 2

Clinical information, demographic data and general medical history is collected from questionnaires.

Optical coherence tomography imaging is performed to obtain peripapillary ...

2018-03 2018-08
3 JHMS - Follow-up 3

Clinical information, demographic data and general medical history is collected from questionnaires.

Optical coherence tomography imaging is performed to obtain peripapillary ...

2018-09 2019-02
4 JHMS - Follow-up 4

Clinical information, demographic data and general medical history is collected from questionnaires.

Optical coherence tomography imaging is performed to obtain peripapillary ...

2019-03 2019-08
5 JHMS - Follow-up 5

Clinical information, demographic data and general medical history is collected from questionnaires.

Optical coherence tomography imaging is performed to obtain peripapillary ...

2019-09

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

Age/birthdate
Sex/gender
Education
Ethnicity, race and religion
Income, possessions, and benefits
Other socio-demographic and economic characteristics

Lifestyle and behaviours

Tobacco
Alcohol
Drugs

Perception of health, quality of life, development and functional limitations

Quality of life
Functional limitations

Diseases

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

Medication and supplements

Medication and supplement intake
Posology and protocol of administration

Death

Vital status

Physical measures and assessments

Anthropometry
Circulation and respiration
Muscles, skeleton and mobility
Sensory and pain
Brain and nerves
Other physical measures and assessments

Laboratory measures

Other laboratory measures

Cognition, personality and psychological measures and assessments

Cognitive functioning

Physical environment

Built environment/neighbourhood characteristics

Administrative information

Date and time-related information
Physical and cognitive measure and biosample-related information

Cognitive functioning

Symbol Digit Modalities Test

Quality of life

Quality of Life in Neurological Disorders

Functional limitations

Patient-determined Disease Steps