Individual Study / PeMSDD

Pediatric Multiple Sclerosis and other Demyelinating Diseases
  1. Home
  2. Individual Studies
  3. PeMSDD

Pediatric Multiple Sclerosis and other Demyelinating Diseases

Networks -
Datasets -
Variables -
Start Year
2011
Visit PeMSDD
Add to cart

Members

Download
Investigators Contacts
  • Dr. Charlie Casper
    University of Utah School of Medicine
  • Dr. Teri L. Schreiner
    University of Colorado
  • Dr. Manikum Moodley
    Mellen Center for Multiple Scerlosis,Cleveland Clinic
  • Dr. Mary Rensel
    Mellen Center for Multiple Scerlosis,Cleveland Clinic
  • Dr. Soe Mar
    Washington University Pediatric MS and other Demyelinating Disease Center
  • Dr. Timothy Lotze
    The Blue Bird Circle Clinic for Multiple Sclerosis, Texas Children’s Hospital
  • Dr. Anita Belman
    Pediatric Multiple Sclerosis Center at New York University Langone Medical Center
  • Dr. Lauren Krupp
    Pediatric Multiple Sclerosis Center at New York University Langone Medical Center
  • Dr. Jan-Mendelt Tillema
    Mayo Clinic Pediatric MS Center
  • Dr. Moses Rodriguez
    Mayo Clinic Pediatric MS Center
  • Dr. Leslie Benson
    Pediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s Hospital
  • Dr. Mark Gorman
    Pediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s Hospital
  • Dr. Tanuja Chitnis
    Partners Pediatric MS Center at the Massachusetts General Hospital for Children
  • Dr. Jennifer Graves
    UCSF Regional Pediatric MS Center
  • Dr. Emmanuelle Waubant
    UCSF Regional Pediatric MS Center
  • Dr. Jayne Ness
    Center for Pediatric-Onset Demyelinating Disease at the Children's of Alabama
  • Dr. Charlie Casper
    University of Utah School of Medicine

Design

Study design
Registry
Follow Up
Information is collected from patients during routine clinical care until the age of 25 years.

Marker Paper

Casper TC, Rose JW, Roalstad S, et al. The US Network of Pediatric Multiple Sclerosis Centers: Development, Progress, and Next Steps. J Child Neurol. 2015;30(10):1381-7.

PUBMED 4379142

Recruitment

Recruitment Target
  • Individuals

Number of Participants

Number of Participants
2,500
Number of Participants with Biological Samples

Access

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other
MRI scans , currently only available for a very small subset

Availability of access information

By contacting the study representative

Sector of research

Possible Access to Data Possible Access to Biosamples
Investigators from the public sector
Investigators from the private sector
Investigators from not-for-profit organization

Transfer

Possible Access to Data Possible Access to Biosamples
Can leave the study facility
Can leave the country

anonymization

Cost

Possible Access to Data No Cost
Possible Access to Biosamples N/A

[We will be preparing a public use dataset that will have no associated costs. Currently, this doesn’t exist yet.]

Cost reduction for co-analyses

Possible Access to Data
Possible Access to Biosamples
Yes
No
Not applicable
Don't know

Timeline

PeMSDD population

Selection Criteria
Maximum age
21
Newborns
Twins
Countries
  • United States of America
Ethnic Origin
Health Status
  • Suspected onset of demyelinating disease of the CNS prior to age 18.
Other Criteria

Recruitment

Sources of recruitment
  • Specific population
Specific Population
  • Clinic patients
Supplementary Information
Patients who have been diagnosed or have a suspected onset of MS or other demyelinating disease are recruited.

Number of Participants

Number of Participants
2,500
Number of Participants with Biological Samples
Data Collection Event
Start Date
2011-05
Data sources
  • Questionnaires
  • Cognitive measures
  • Physical measures

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

Socio-demographic and economic characteristics

Age/birthdate
Sex/gender
Family and household structure
Education
Residence
Birthplace
Ethnicity, race and religion
Language
Labour force and retirement

Lifestyle and behaviours

Tobacco

Birth, pregnancy and reproductive health history

Puberty, menstruation, menopause and andropause
Pregnancy, delivery and birth

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

Life course development
Functional limitations

Diseases

Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism (D50-D89)
Mental and behavioural disorders (F00-F99)
Diseases of the nervous system (G00-G99)
Diseases of the eye and adnexa (H00-H59)
Diseases of the ear and mastoid process (H60-H95)
Diseases without precise specification or falling into multiple categories

Symptoms and signs

Symptoms and signs involving the digestive system and abdomen (R10-R19)
Symptoms and signs involving nervous and musculoskeletal systems (R25-R29)
Symptoms and signs involving the urinary system (R30-R39)
Symptoms and signs involving cognition, perception, emotional state and behaviour (R40-R46)
Symptoms and signs involving speech and voice (R47-R49)
Symptoms related to multiple categories

Medication and supplements

Medication and supplement intake
Posology and protocol of administration

Non-pharmacological interventions

Radiological interventions
Other and unspecified non-pharmacological interventions

Health and community care services utilization

Hospitalizations
Other health and community care

Death

Vital status

Physical measures and assessments

Physical characteristics
Anthropometry
Muscles, skeleton and mobility
Sensory and pain
Brain and nerves
Digestion

Laboratory measures

Hematology
Biochemistry
Immunology
Other laboratory measures

Cognition, personality and psychological measures and assessments

Cognitive functioning
Psychological distress and emotions

Preschool, school and work life

Other preschool, school or work life-related information

Physical environment

Chemical exposure

Administrative information

Date and time-related information
Questionnaire and interview-related information
Physical and cognitive measure and biosample-related information
Data and sample collection center-related information
Other administrative information

Cognitive functioning

California Verbal Learning Test
Wechsler Adult Intelligence Scale (Coding)
Wechsler Adult Intelligence Scale (Digit Span)
Wechsler Abbreviated Scale of Intelligence Full Scale IQ