Canadian Pediatric Demyelinating Disease Network
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.
Overview
- Acronym
- CPDDN
- Investigators
-
- Contacts
-
General Design
- Study design
- Case-control
- Start - End Year
- 2004 -
- General Information on Follow Up (profile, frequency)
-
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.
- Recruitment Target
-
- Individuals
- Number of Participants
- 739
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
|
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 21459044Timeline
Populations
CPDDN - Phase I (Demyelinating Children)
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
-
16
- Countries
-
- Canada
- Canadian Provinces
-
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland and Labrador
- Nova Scotia
- Ontario
- Quebec
- Saskatchewan
- Territory
- Victoria, Vancouver, Calgary, Edmonton, Saskatoon, Winnipeg, Windsor, London, Mississauga, Ottawa, Hamilton, Toronto, Montreal, Sherbrooke, Kingston, St. John's, Saint John, and Halifax
- Health Status
-
- Meet criteria for acquired demyelinating syndromes (ADS)
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Supplementary Information
-
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.
Sample Size
- Number of Participants
- 302
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | CPDDN - Phase I (Demyelinating Children) - Baseline |
|
|
2004 (September) | 2010 (June) |
| 1 | CPDDN - Phase I (Demyelinating Children) - Follow-up 3 months |
|
|
2004 (December) | 2010 (September) |
| 2 | CPDDN - Phase I (Demyelinating Children) - Follow-up 6 months |
|
|
2005 (March) | 2010 (December) |
| 4 | CPDDN - Phase I (Demyelinating Children) - Follow-up 1 year |
|
|
2005 (September) | 2011 (June) |
| 5 | CPDDN - Phase I (Demyelinating Children) - Follow-up 2 years |
|
|
2006 (September) | 2012 (June) |
| 6 | CPDDN - Phase I (Demyelinating Children) - Follow-up 3 years |
|
|
2007 (September) | 2013 (June) |
| 7 | CPDDN - Phase I (Demyelinating Children) - Follow-up 4 years |
|
|
2008 (September) | 2014 (June) |
| 7 | CPDDN - Phase I (Demyelinating Children) - Follow-up 5 years |
|
|
2009 (September) | 2015 (June) |
| 8 | CPDDN - Phase I (Demyelinating Children) - Follow-up 6 years |
|
|
2010 (September) | 2016 (June) |
| 9 | CPDDN - Phase I (Demyelinating Children) - Follow-up 7 years |
|
|
2011 (September) | 2017 (June) |
| 10 | CPDDN - Phase I (Demyelinating Children) - Follow-up 8 years |
|
|
2012 (September) | 2018 (June) |
| 11 | CPDDN - Phase I (Demyelinating Children) - Follow-up 9 years |
|
|
2013 (September) | 2019 (June) |
| 12 | CPDDN - Phase I (Demyelinating Children) - Follow-up 10 years |
|
|
2014 (September) | 2020 (February) |
| 13 | CPDDN - Phase I (Demyelinating Children) - Follow-up 11 years |
|
|
2015 (September) | 2020 (February) |
| 14 | CPDDN - Phase I (Demyelinating Children) - Follow-up 12 years |
|
|
2016 (September) | 2020 (February) |
| 15 | CPDDN - Phase I (Demyelinating Children) - Follow-up 13 years |
|
|
2017 (September) | 2020 (February) |
| 16 | CPDDN - Phase I (Demyelinating Children) - Follow-up 14 years |
|
|
2018 (September) | 2020 (February) |
| 17 | CPDDN - Phase I (Demyelinating Children) - Follow-up 15 years |
|
|
2019 (September) | 2020 (February) |
CPDDN - Phase II (Demyelinating Children)
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
- Countries
-
- Canada
- United States of America
- Canadian Provinces
-
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland and Labrador
- Nova Scotia
- Ontario
- Quebec
- Saskatchewan
- Health Status
-
- Meet criteria for acquired demyelinating syndromes (ADS)
Sources of Recruitment
- 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.
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | CPDDN - Phase II (Demyelinating Children) - Baseline |
|
|
2010 (July) | 2015 (April) |
| 1 | CPDDN - Phase II (Demyelinating Children) - Follow-up 3 months |
|
|
2010 (October) | 2015 (July) |
| 2 | CPDDN - Phase II (Demyelinating Children) - Follow-up 6 months |
|
|
2011 (January) | 2015 (October) |
| 3 | CPDDN - Phase II (Demyelinating Children) - Follow-up 1 year |
|
|
2011 (July) | 2016 (April) |
| 4 | CPDDN - Phase II (Demyelinating Children) - Follow-up 2 years |
|
|
2012 (July) | 2017 (April) |
| 5 | CPDDN - Phase II (Demyelinating Children) - Follow-up 3 years |
|
|
2013 (July) | 2018 (April) |
| 6 | CPDDN - Phase II (Demyelinating Children) - Follow-up 4 years |
|
|
2014 (July) | 2019 (April) |
| 7 | CPDDN - Phase II (Demyelinating Children) - Follow-up 5 years |
|
|
2015 (July) | 2020 (February) |
| 8 | CPDDN - Phase II (Demyelinating Children) - Follow-up 6 years |
|
|
2016 (July) | 2020 (February) |
| 9 | CPDDN - Phase II (Demyelinating Children) - Follow-up 7 years |
|
|
2017 (July) | 2020 (February) |
| 10 | CPDDN - Phase II (Demyelinating Children) - Follow-up 8 years |
|
|
2018 (July) | 2020 (February) |
| 11 | CPDDN - Phase II (Demyelinating Children) - Follow-up 9 years |
|
|
2019 (July) | 2020 (February) |
CPDDN - Phase II (Healthy Controls)
This population is composed of healthy volunteers without a history of demyelination or multiple sclerosis (MS).
Selection Criteria
- Maximum age
-
16
- Countries
-
- Canada
- United States of America
- Canadian Provinces
-
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland and Labrador
- Nova Scotia
- Ontario
- Quebec
- Saskatchewan
- Health Status
-
- No history of demyelination or multiple sclerosis
Sources of Recruitment
- General Population
-
- Volunteer enrolment
Sample Size
- Number of Participants
- 252
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | CPDDN - Phase II (Healthy Controls) - Baseline |
|
|
2008 (June) | 2013 (March) |
| 1 | CPDDN - Phase II (Healthy Controls) - Follow-up 18 months |
|
|
2009 (December) | 2014 (September) |
CPDDN - Phase III (MS Children)
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
- Countries
-
- Canada
- United States of America
- Canadian Provinces
-
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland and Labrador
- Nova Scotia
- Ontario
- Quebec
- Saskatchewan
- 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).
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Supplementary Information
-
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.
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | CPDDN - Phase III (MS Children) - Baseline |
|
|
2015 (August) | 2019 (February) |
| 1 | CPDDN - Phase III (MS Children) - Follow-up 3 months |
|
|
2015 (November) | 2019 (May) |
| 2 | CPDDN - Phase III (MS Children) - Follow-up 6 months |
|
|
2015 (February) | 2019 (August) |
| 3 | CPDDN - Phase III (MS Children) - Follow-up 1 year |
|
|
2016 (August) | 2020 (February) |
| 4 | CPDDN - Phase III (MS Children) - Follow-up 2 years |
|
|
2017 (August) | 2020 (February) |
| 5 | CPDDN - Phase III (MS Children) - Follow-up 3 years |
|
|
2018 (August) | 2020 (February) |
| 6 | CPDDN - Phase III (MS Children) - Follow-up 4 years |
|
|
2019 (August) | 2020 (February) |
CPDDN - Phase III (Healthy Controls)
This population is composed of healthy volunteers without a history of demyelination or multiple sclerosis (MS).
Selection Criteria
- Maximum age
-
18
- Countries
-
- Canada
- United States of America
- Canadian Provinces
-
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland and Labrador
- Nova Scotia
- Ontario
- Quebec
- Saskatchewan
- 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).
Sources of Recruitment
- General Population
-
- Volunteer enrolment
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | CPDDN - Phase III (Healthy Controls) - Baseline |
|
|
2016 (February) | 2020 (March) |
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: 2022-12-05T12:16:58.442