Canadian Pediatric Demyelinating Disease Network
Networks
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Datasets
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Variables
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The primary objective of this study is to identify the clinical, MRI, genetic and immunological features that distinguish children presenting with a first attack of multiple sclerosis from children with monophasic demyelination or relapsing non-MS disease (myelin oligodendrocyte glycoprotein associated disease, aquaporin 4 neuromyelitis optica spectrum disorder). Specific objectives of this prospective multisite longitudinal study are to:
- Examine clinical-demographic, epidemiological, pathobiological, as well as neuro-imaging features and outcomes of acute demyelination in Canadian children as well as in a single center in the USA.
- Aid in the early identification of presenting features, immunological signatures and imaging indicative of MS, with the goal of increasing knowledge regarding the earliest aspects of MS pathobiology.
- Uncover the progressive burden of pediatric MS from childhood through young adulthood.
- Start Year
- 2004
| Investigators | Contacts |
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Design
- Study design
- Case-control
- Follow Up
- Patients were first seen at the time of their initial neurological attack, with additional follow-ups at 3, 6, months, 1 year and from there on annually post their first demyelinating event and at the time of any further demyelinating attacks. Healthy research volunteers completed one study visit and were followed-up 18 months later.
Marker Paper
Banwell B, Bar-Or A, Arnold DL, et al. Clinical, environmental, and genetic determinants of multiple sclerosis in children with acute demyelination a prospective national cohort study. Lancet Neurol 2011;10436–445.
PUBMED 21459044
Recruitment
- Recruitment Target
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- Individuals
Number of Participants
- Number of Participants
- 739
- Number of Participants with Biological Samples
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Timeline
Populations
The population is composed of Canadian children aged younger than 16 years who presented acquired demyelinating syndrome (ADS), to any of the 16 paediatric health-care facilities or seven regional health-care facilities in Canada and were enrolled within 90 days of symptom onset.
Selection Criteria
- Maximum age
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16
- Newborns
- Twins
- Countries
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- Canada
- Territory
- Victoria, Vancouver, Calgary, Edmonton, Saskatoon, Winnipeg, Windsor, London, Mississauga, Ottawa, Hamilton, Toronto, Montreal, Sherbrooke, Kingston, St. John's, Saint John, and Halifax
- Ethnic Origin
-
- Health Status
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- Meet criteria for acquired demyelinating syndromes (ADS)
- Supplementary Information about selection criteria
Recruitment
- Sources of recruitment
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- Specific population
- Specific Population
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- Clinic patients
- Supplementary Information
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Patients from all 24 pediatric health care institutions in Canada are invited to participate in the study at the time of their first demyelinating attack within 90 days of symptom onset.
Number of Participants
- Number of Participants
- 302
- Number of Participants with Biological Samples
- Supplementary Information about selection criteria
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
CPDDN - Phase I (Demyelinating Children) - Baseline
|
Information was collected from participants and/or guardian through interviews which collected information about demographics, Multiple Sclerosis (MS) history, birth history, early development, ... | 2004-09 | 2010-06 |
| 1 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 3 months
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2004-12 | 2010-09 |
| 2 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 6 months
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2005-03 | 2010-12 |
| 4 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 1 year
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2005-09 | 2011-06 |
| 5 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 2 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2006-09 | 2012-06 |
| 6 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 3 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2007-09 | 2013-06 |
| 7 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 4 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2008-09 | 2014-06 |
| 7 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 5 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2009-09 | 2015-06 |
| 8 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 6 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2010-09 | 2016-06 |
| 9 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 7 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2011-09 | 2017-06 |
| 10 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 8 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2012-09 | 2018-06 |
| 11 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 9 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2013-09 | 2019-06 |
| 12 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 10 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2014-09 | 2020-02 |
| 13 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 11 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2015-09 | 2020-02 |
| 14 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 12 years
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Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2016-09 | 2020-02 |
| 15 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 13 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2017-09 | 2020-02 |
| 16 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 14 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2018-09 | 2020-02 |
| 17 |
CPDDN - Phase I (Demyelinating Children) - Follow-up 15 years
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Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2019-09 | 2020-02 |
The population is composed of Canadian children aged younger than 16 years who presented with acquired demyelinating syndrome (ADS), to any of the 16 paediatric health-care facilities or seven regional health-care facilities in Canada or in the United States of America and were enrolled within 90 days of symptom onset.
Selection Criteria
- Maximum age
-
16
- Newborns
- Twins
- Countries
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- Canada
- United States of America
- Territory
- Ethnic Origin
-
- Health Status
-
- Meet criteria for acquired demyelinating syndromes (ADS)
Recruitment
- Sources of recruitment
-
- Specific population
- Specific Population
-
- Clinic patients
- Supplementary Information
-
Patients from all 24 pediatric health care institutions in Canada or the United States of America are invited to participate in the study at the time of their first demyelinating attack within 90 days of symptom onset.
Number of Participants
- Number of Participants
- Number of Participants with Biological Samples
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
CPDDN - Phase II (Demyelinating Children) - Baseline
|
Information was collected from participants and/or guardian through interviews which collected information about demographics, Multiple Sclerosis (MS) history, birth history, early development, ... | 2010-07 | 2015-04 |
| 1 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 3 months
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2010-10 | 2015-07 |
| 2 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 6 months
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2011-01 | 2015-10 |
| 3 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 1 year
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2011-07 | 2016-04 |
| 4 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 2 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2012-07 | 2017-04 |
| 5 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 3 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2013-07 | 2018-04 |
| 6 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 4 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2014-07 | 2019-04 |
| 7 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 5 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2015-07 | 2020-02 |
| 8 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 6 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2016-07 | 2020-02 |
| 9 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 7 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2017-07 | 2020-02 |
| 10 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 8 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2018-07 | 2020-02 |
| 11 |
CPDDN - Phase II (Demyelinating Children) - Follow-up 9 years
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Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2019-07 | 2020-02 |
This population is composed of healthy volunteers without a history of demyelination or multiple sclerosis (MS).
Selection Criteria
- Maximum age
-
16
- Newborns
- Twins
- Countries
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- Canada
- United States of America
- Territory
- Ethnic Origin
-
- Health Status
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- No history of demyelination or multiple sclerosis
Recruitment
- Sources of recruitment
-
- General population
- General Population
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- Volunteer enrolment
Number of Participants
- Number of Participants
- 252
- Number of Participants with Biological Samples
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
CPDDN - Phase II (Healthy Controls) - Baseline
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2008-06 | 2013-03 |
| 1 |
CPDDN - Phase II (Healthy Controls) - Follow-up 18 months
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2009-12 | 2014-09 |
The population is composed of Canadian children aged younger than 17 years and 11 months who met criteria for multiple sclerosis (MS), to any of the 16 paediatric health-care facilities or seven regional health-care facilities in Canada or in the United States of America and were enrolled within 90 days of symptom onset.
Selection Criteria
- Maximum age
-
18
- Newborns
- Twins
- Countries
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- Canada
- United States of America
- Territory
- Ethnic Origin
-
- Health Status
-
- Meet criteria for multiple sclerosis
- Supplementary Information about selection criteria
- In the phase III, enrolment criteria by age was broadened up to 17 years 11 months and health status criteria was restricted to individuals meeting criteria for MS (enrolled within 6 months post first attack).
Recruitment
- Sources of recruitment
-
- Specific population
- Specific Population
-
- Clinic patients
- Supplementary Information
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Patients from pediatric health care institutions in Canada or the United States of America are invited to participate in the study at the time of their first demyelinating attack within 90 days of symptom onset. New participants were enrolled.
Number of Participants
- Number of Participants
- Number of Participants with Biological Samples
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
CPDDN - Phase III (MS Children) - Baseline
|
Information was collected from participants and/or guardian through interviews which collected information about demographics, Multiple Sclerosis (MS) history, birth history, early development, ... | 2015-08 | 2019-02 |
| 1 |
CPDDN - Phase III (MS Children) - Follow-up 3 months
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2015-11 | 2019-05 |
| 2 |
CPDDN - Phase III (MS Children) - Follow-up 6 months
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2015-02 | 2019-08 |
| 3 |
CPDDN - Phase III (MS Children) - Follow-up 1 year
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2016-08 | 2020-02 |
| 4 |
CPDDN - Phase III (MS Children) - Follow-up 2 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2017-08 | 2020-02 |
| 5 |
CPDDN - Phase III (MS Children) - Follow-up 3 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2018-08 | 2020-02 |
| 6 |
CPDDN - Phase III (MS Children) - Follow-up 4 years
|
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, ... | 2019-08 | 2020-02 |
This population is composed of healthy volunteers without a history of demyelination or multiple sclerosis (MS).
Selection Criteria
- Maximum age
-
18
- Newborns
- Twins
- Countries
-
- Canada
- United States of America
- Territory
- Ethnic Origin
-
- Health Status
-
- No history of demyelination or multiple sclerosis
- Supplementary Information about selection criteria
- In the phase III, enrolment criteria by age was broadened up to 17 years 11 months and health status criteria was restricted to individuals meeting criteria for MS (enrolled within 6 months post first attack).
Recruitment
- Sources of recruitment
-
- General population
- General Population
-
- Volunteer enrolment
Number of Participants
- Number of Participants
- Number of Participants with Biological Samples
Data Collection Event
Information was collected from participants and/or guardian through interviews which collected information about medications, smoke exposure, travel history, family, education. Additionally, questionnaires were used to collect the PedsQL, Barratt Simplified Measure of Social Status, Paediatric Index of Emotional Distress, the HADS, Godin Leisure Time Exercise, Physical Activity Self Efficacy Scale, and Exercise Goal Setting Scale.
Neurocognitive batteries (including the SDMT) were conducted in-person.
MRI and accelerometer data were also collected.
Blood was collected for serum, DNA and PBMCs.
- Start Date
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2016-02
- End Date
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2020-03
- Data sources
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- Questionnaires
- Cognitive measures
- Physical measures
- Biosamples
- Data sources - Biosamples
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- Blood
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
- Tobacco
- Alcohol
- Drugs
- Nutrition
- Breastfeeding
- Physical activity
- Sleep
- Sexual behaviours and orientation
- Technological devices
- Misbehaviour and criminality
- Other and unspecified lifestyle information
Socio-demographic and economic characteristics
Age/birthdate
Sex/gender
Marital/partner status
Family and household structure
Education
Residence
Birthplace
Citizenship and immigrant status
Ethnicity, race and religion
Language
Labour force and retirement
Other socio-demographic and economic characteristics
Lifestyle and behaviours
Tobacco
Breastfeeding
Physical activity
Leisure activities
Other and unspecified lifestyle information
Birth, pregnancy and reproductive health history
Pregnancy, delivery and birth
Perception of health, quality of life, development and functional limitations
Perception of health
Quality of life
Life course development
Functional limitations
Use of assistive devices
Other perception of health, quality of life and functional limitation-related information
Diseases
Certain infectious and parasitic diseases (A00-B99)
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)
Injury, poisoning and certain other consequences of external causes (S00-T98)
Diseases without precise specification or falling into multiple categories
Symptoms and signs
Symptoms and signs involving nervous and musculoskeletal systems (R25-R29)
Symptoms and signs involving cognition, perception, emotional state and behaviour (R40-R46)
Symptoms and signs involving speech and voice (R47-R49)
General symptoms and signs (R50-R69)
Symptoms related to multiple categories
Medication and supplements
Medication and supplement intake
Posology and protocol of administration
Non-pharmacological interventions
Other and unspecified non-pharmacological interventions
Health and community care services utilization
Hospitalizations
Death
Vital status
Physical measures and assessments
Physical characteristics
Anthropometry
Muscles, skeleton and mobility
Brain and nerves
Laboratory measures
Hematology
Biochemistry
Virology
Immunology
Genomics
Cognition, personality and psychological measures and assessments
Cognitive functioning
Personality
Psychological distress and emotions
Preschool, school and work life
Preschool life
School life
Work life
Other preschool, school or work life-related information
Social environment and relationships
Social network
Physical environment
Chemical exposure
Administrative information
Identifiers
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
Behavior Rating Inventory of Executive Function
Delis-Kaplan Executive Function System
Grooved Pegboard Test
Symbol Digit Modalities Test
Test of Memory and Learning
Wechsler Abbreviated Scale of Intelligence Full Scale IQ
Woodcock Johnson Psycho-Educational Battery
Personality
Behavior Assessment System for Children
Exercise Goal-Setting Scale
Psychological distress and emotions
Hospital Anxiety and Depression Scale
Paediatric Index of Emotional Distress
Quality of life
KIDSCREEN Generic Health-Related Quality of Life Questionnaire
Multiple Sclerosis Quality of Life
Pediatric Quality of Life Inventory
Life course development
Beery-Buktenica Developmental Test of Visual-Motor Integration
Functional limitations
Expanded Disability Status Scale
Other perception of health, quality of life and functional limitation-related information
Functional Systems Scores
Physical activity
Godin Leisure-Time Exercise Questionnaire
Physical Activity Self-Efficacy Scale