Maelstrom Research

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

Dr. Brenda Banwell

Children’s Hospital of Philadelphia

Dr. Ann Yeh

University of Toronto

Dr. Amit Bar-Or

University of Pennsylvania

Dr. Douglas Arnold

Montreal Neurological Institute-Hospital

Contacts

Dr. Brenda Banwell

Children’s Hospital of Philadelphia

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

General Information

Availability of data and biosamples

Possible Access to Data
Possible Access to Biosamples
Other

Yes

Not applicable

Don't know

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

Timeline

Populations

Information was collected from participants and/or guardian through interviews which collected information about demographics, Multiple Sclerosis (MS) history, birth history, early development, infection history, family and travel history. Clinicians provided information on medication usage and conducted a neurological exam (in person). MRI data were also collected. Cerebrospinal fluid was collected (if residual CSF was available from clinically indicated lumbar puncture) as well as blood samples for serum, DNA and PBMCs.

Start Date

2004 (September)

End Date

2010 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood
Other : Cerebrospinal fluid

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 KIDSCREEN, PedsQL, and MSQoL54 (in MS children). Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Genetic interviews with participant and/or guardians were performed to collect information on residential history, family health conditions, ancestry and occupation. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2004 (December)

End Date

2010 (September)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2005 (March)

End Date

2010 (December)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2005 (September)

End Date

2011 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2006 (September)

End Date

2012 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2007 (September)

End Date

2013 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2008 (September)

End Date

2014 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2009 (September)

End Date

2015 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2010 (September)

End Date

2016 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2011 (September)

End Date

2017 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2012 (September)

End Date

2018 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2013 (September)

End Date

2019 (June)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2014 (September)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2015 (September)

End Date

2020 (February)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2016 (September)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2017 (September)

End Date

2020 (February)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2018 (September)

End Date

2020 (February)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2019 (September)

End Date

2020 (February)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2010 (July)

End Date

2015 (April)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood
Other : Cerebrospinal fluid

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 KIDSCREEN, PedsQL, MSQoL54 (in MS children). Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Genetic interviews with participant and/or guardians were performed to collect information on residential history, family health conditions, ancestry and occupation. MRI data were also collected. Blood was collected for serum, DNA and PBMCs

Start Date

2010 (October)

End Date

2015 (July)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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 KIDSCREEN, PedsQL, MSQoL54 (in MS children), BASC and BRIEF. The following neurocognitive tests were administered in-person by a trained neuropsychometrist: D-KEFS, TOMAL-2, WASI, Grooved Pegboard Test, SDMT, BEERY VMI, WJ-III. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2011 (January)

End Date

2015 (October)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

Start Date

2011 (July)

End Date

2016 (April)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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, KIDSCREEN, MSQoL54 (in MS children), BASC, BRIEF, 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. The following neurocognitive tests were administered in-person by a trained neuropsychometrist: D-KEFS, TOMAL-2, WASI, Grooved Pegboard Test, SDMT, BEERY VMI, WJ-III Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2012 (July)

End Date

2017 (April)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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, KIDSCREEN, MSQoL54 (in MS children), 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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2013 (July)

End Date

2018 (April)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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, KIDSCREEN, MSQoL54 (in MS children), 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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2014 (July)

End Date

2019 (April)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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, KIDSCREEN, MSQoL54 (in MS children), 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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2015 (July)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2016 (July)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2017 (July)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2018 (July)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected in MS children only. Blood was collected for serum, DNA and PBMCs.

Start Date

2019 (July)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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 KIDSCREEN, PedsQL, BASC, and BRIEF. The following neurocognitive tests were administered in-person by a trained neuropsychometrist: D-KEFS, TOMAL-2, WASI, Grooved Pegboard Test, SDMT, BEERY VMI, WJ-III. Genetic interviews with participant and/or guardians were performed to collect information on residential history, family health conditions, ancestry and occupation. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2008 (June)

End Date

2013 (March)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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 KIDSCREEN, PedsQL, BASC, and BRIEF. The following neurocognitive tests were administered in-person by a trained neuropsychometrist: D-KEFS, TOMAL-2, WASI, Grooved Pegboard Test, SDMT, BEERY VMI, WJ-III. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2009 (December)

End Date

2014 (September)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

Information was collected from participants and/or guardian through interviews which collected information about demographics, Multiple Sclerosis (MS) history, birth history, early development, infection history, family, smoke exposure, and travel history. Additionally, questionnaires were used to collect the 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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI and accelerometer data were also collected. Cerebrospinal fluid was collected (if residual CSF was available from clinically indicated lumbar puncture) as well as blood samples for serum, DNA and PBMCs.

Start Date

2015 (August)

End Date

2019 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood
Other : Cerebrospinal fluid

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2015 (November)

End Date

2019 (May)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. The SDMT was administered in-person. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI data were also collected Blood was collected for serum, DNA and PBMCs.

Start Date

2015 (February)

End Date

2019 (August)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. The SDMT was administered in-person. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI and accelerometer data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2016 (August)

End Date

2020 (February)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. The SDMT was administered in-person. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. Neurocognitive batteries were conducted in-person. MRI and accelerometer data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2017 (August)

End Date

2020 (February)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2018 (August)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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. Clinicians provided information on medication usage, episodes, and conducted a neurological exam. MRI data were also collected. Blood was collected for serum, DNA and PBMCs.

Start Date

2019 (August)

End Date

2020 (February)

Data sources

Questionnaires
Physical measures
Biosamples

Data sources - Biosamples

Blood

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

2016 (February)

End Date

2020 (March)

Data sources

Questionnaires
Cognitive measures
Physical measures
Biosamples

Data sources - Biosamples

Blood

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

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	Questionnaires Physical measures Biosamples	Blood Other : Cerebrospinal fluid	2004 (September)	2010 (June)
1	CPDDN - Phase I (Demyelinating Children) - Follow-up 3 months	Questionnaires Physical measures Biosamples	Blood	2004 (December)	2010 (September)
2	CPDDN - Phase I (Demyelinating Children) - Follow-up 6 months	Questionnaires Physical measures Biosamples	Blood	2005 (March)	2010 (December)
4	CPDDN - Phase I (Demyelinating Children) - Follow-up 1 year	Questionnaires Physical measures Biosamples	Blood	2005 (September)	2011 (June)
5	CPDDN - Phase I (Demyelinating Children) - Follow-up 2 years	Questionnaires Physical measures Biosamples	Blood	2006 (September)	2012 (June)
6	CPDDN - Phase I (Demyelinating Children) - Follow-up 3 years	Questionnaires Physical measures Biosamples	Blood	2007 (September)	2013 (June)
7	CPDDN - Phase I (Demyelinating Children) - Follow-up 4 years	Questionnaires Physical measures Biosamples	Blood	2008 (September)	2014 (June)
7	CPDDN - Phase I (Demyelinating Children) - Follow-up 5 years	Questionnaires Physical measures Biosamples	Blood	2009 (September)	2015 (June)
8	CPDDN - Phase I (Demyelinating Children) - Follow-up 6 years	Questionnaires Physical measures Biosamples	Blood	2010 (September)	2016 (June)
9	CPDDN - Phase I (Demyelinating Children) - Follow-up 7 years	Questionnaires Physical measures Biosamples	Blood	2011 (September)	2017 (June)
10	CPDDN - Phase I (Demyelinating Children) - Follow-up 8 years	Questionnaires Physical measures Biosamples	Blood	2012 (September)	2018 (June)
11	CPDDN - Phase I (Demyelinating Children) - Follow-up 9 years	Questionnaires Physical measures Biosamples	Blood	2013 (September)	2019 (June)
12	CPDDN - Phase I (Demyelinating Children) - Follow-up 10 years	Questionnaires Physical measures Biosamples	Blood	2014 (September)	2020 (February)
13	CPDDN - Phase I (Demyelinating Children) - Follow-up 11 years	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2015 (September)	2020 (February)
14	CPDDN - Phase I (Demyelinating Children) - Follow-up 12 years	Questionnaires Physical measures Biosamples	Blood	2016 (September)	2020 (February)
15	CPDDN - Phase I (Demyelinating Children) - Follow-up 13 years	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2017 (September)	2020 (February)
16	CPDDN - Phase I (Demyelinating Children) - Follow-up 14 years	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2018 (September)	2020 (February)
17	CPDDN - Phase I (Demyelinating Children) - Follow-up 15 years	Questionnaires Cognitive measures Physical measures Biosamples	Blood	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

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	Questionnaires Physical measures Biosamples	Blood Other : Cerebrospinal fluid	2010 (July)	2015 (April)
1	CPDDN - Phase II (Demyelinating Children) - Follow-up 3 months	Questionnaires Physical measures Biosamples	Blood	2010 (October)	2015 (July)
2	CPDDN - Phase II (Demyelinating Children) - Follow-up 6 months	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2011 (January)	2015 (October)
3	CPDDN - Phase II (Demyelinating Children) - Follow-up 1 year	Questionnaires Physical measures Biosamples	Blood	2011 (July)	2016 (April)
4	CPDDN - Phase II (Demyelinating Children) - Follow-up 2 years	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2012 (July)	2017 (April)
5	CPDDN - Phase II (Demyelinating Children) - Follow-up 3 years	Questionnaires Physical measures Biosamples	Blood	2013 (July)	2018 (April)
6	CPDDN - Phase II (Demyelinating Children) - Follow-up 4 years	Questionnaires Physical measures Biosamples	Blood	2014 (July)	2019 (April)
7	CPDDN - Phase II (Demyelinating Children) - Follow-up 5 years	Questionnaires Physical measures Biosamples	Blood	2015 (July)	2020 (February)
8	CPDDN - Phase II (Demyelinating Children) - Follow-up 6 years	Questionnaires Physical measures Biosamples	Blood	2016 (July)	2020 (February)
9	CPDDN - Phase II (Demyelinating Children) - Follow-up 7 years	Questionnaires Physical measures Biosamples	Blood	2017 (July)	2020 (February)
10	CPDDN - Phase II (Demyelinating Children) - Follow-up 8 years	Questionnaires Physical measures Biosamples	Blood	2018 (July)	2020 (February)
11	CPDDN - Phase II (Demyelinating Children) - Follow-up 9 years	Questionnaires Physical measures Biosamples	Blood	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

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	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2008 (June)	2013 (March)
1	CPDDN - Phase II (Healthy Controls) - Follow-up 18 months	Questionnaires Cognitive measures Physical measures Biosamples	Blood	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

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	Questionnaires Physical measures Biosamples	Blood Other : Cerebrospinal fluid	2015 (August)	2019 (February)
1	CPDDN - Phase III (MS Children) - Follow-up 3 months	Questionnaires Physical measures Biosamples	Blood	2015 (November)	2019 (May)
2	CPDDN - Phase III (MS Children) - Follow-up 6 months	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2015 (February)	2019 (August)
3	CPDDN - Phase III (MS Children) - Follow-up 1 year	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2016 (August)	2020 (February)
4	CPDDN - Phase III (MS Children) - Follow-up 2 years	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2017 (August)	2020 (February)
5	CPDDN - Phase III (MS Children) - Follow-up 3 years	Questionnaires Physical measures Biosamples	Blood	2018 (August)	2020 (February)
6	CPDDN - Phase III (MS Children) - Follow-up 4 years	Questionnaires Physical measures Biosamples	Blood	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

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

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	Questionnaires Cognitive measures Physical measures Biosamples	Blood	2016 (February)	2020 (March)

Participating Studies

Acronym	Name	Study design	Countries

Harmonization Initiatives Included

Acronym	Name

Datasets

Search Variables

Name	Data Collection Events	Variables

Variables Content Summary

Areas of Information Collected per per Population and Data Collection Event

Networks

Acronym	Name	Harmonization Initiatives	Individual Studies

Last Update: 2022-12-05T12:16:58.442

Canadian Pediatric Demyelinating Disease Network

Overview

General Design

Access

Marker Paper

Documents

Timeline

Populations

Selection Criteria

Sources of Recruitment

Sample Size

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Sample Size

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Documents

Data Collection Events

Participating Studies

Harmonization Initiatives Included

Datasets

Areas of Information Collected

Variables Content Summary

Areas of Information Collected

Areas of Information Collected per per Population and Data Collection Event

Networks

Canadian Pediatric Demyelinating Disease Network

Overview

Brenda Banwell

Ann Yeh

Amit Bar-Or

Douglas Arnold

Brenda Banwell

General Design

Access

Marker Paper

Documents

Timeline

Populations

CPDDN - Phase I (Demyelinating Children) - Baseline

CPDDN - Phase I (Demyelinating Children) - Follow-up 3 months

CPDDN - Phase I (Demyelinating Children) - Follow-up 6 months

CPDDN - Phase I (Demyelinating Children) - Follow-up 1 year

CPDDN - Phase I (Demyelinating Children) - Follow-up 2 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 3 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 4 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 5 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 6 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 7 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 8 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 9 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 10 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 11 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 12 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 13 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 14 years

CPDDN - Phase I (Demyelinating Children) - Follow-up 15 years

CPDDN - Phase II (Demyelinating Children) - Baseline

CPDDN - Phase II (Demyelinating Children) - Follow-up 3 months

CPDDN - Phase II (Demyelinating Children) - Follow-up 6 months

CPDDN - Phase II (Demyelinating Children) - Follow-up 1 year

CPDDN - Phase II (Demyelinating Children) - Follow-up 2 years

CPDDN - Phase II (Demyelinating Children) - Follow-up 3 years

CPDDN - Phase II (Demyelinating Children) - Follow-up 4 years

CPDDN - Phase II (Demyelinating Children) - Follow-up 5 years

CPDDN - Phase II (Demyelinating Children) - Follow-up 6 years

CPDDN - Phase II (Demyelinating Children) - Follow-up 7 years

CPDDN - Phase II (Demyelinating Children) - Follow-up 8 years

CPDDN - Phase II (Demyelinating Children) - Follow-up 9 years

CPDDN - Phase II (Healthy Controls) - Baseline

CPDDN - Phase II (Healthy Controls) - Follow-up 18 months

CPDDN - Phase III (MS Children) - Baseline

CPDDN - Phase III (MS Children) - Follow-up 3 months

CPDDN - Phase III (MS Children) - Follow-up 6 months

CPDDN - Phase III (MS Children) - Follow-up 1 year

CPDDN - Phase III (MS Children) - Follow-up 2 years

CPDDN - Phase III (MS Children) - Follow-up 3 years

CPDDN - Phase III (MS Children) - Follow-up 4 years

CPDDN - Phase III (Healthy Controls) - Baseline

Selection Criteria

Sources of Recruitment

Sample Size

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Sample Size

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Documents

Data Collection Events

Selection Criteria

Sources of Recruitment

Documents

Data Collection Events

Participating Studies

Harmonization Initiatives Included

Datasets

Areas of Information Collected

Variables Content Summary