Pediatric Multiple Sclerosis and other Demyelinating Diseases
The objective of this study is to create a database for data collected during routine clinical care of pediatric patients with possible early onset of demyelinating disease. The database will contain information from multiple clinics and will help to better understand the cause and early detection of demyelinating disorders (like multiple sclerosis) in children.
Overview
- Acronym
- PeMSDD
- Website
- PeMSDD
- Investigators
-
Dr. Leslie BensonPediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s HospitalDr. Mark GormanPediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s Hospital
- Contacts
-
General Design
- Study design
- Registry
- Start - End Year
- 2011 -
- General Information on Follow Up (profile, frequency)
-
Information is collected from patients during routine clinical care until the age of 25 years.
- Recruitment Target
-
- Individuals
- Number of Participants
- 2,500
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
- By contacting the study representative: Principal Investigator T. Charles Casper (University of Utah)
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 |
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 4379142Timeline
Population
PeMSDD population
The population is composed of patients with suspected onset of demyelinating disease of the central nervous system (CNS) prior to age 18 and 21 years of age or younger at the time of recruitment.
Selection Criteria
- Maximum age
-
21
- Countries
-
- United States of America
- Health Status
-
- Suspected onset of demyelinating disease of the CNS prior to age 18.
Sources of Recruitment
- Specific Population
-
- Clinic patients
- Supplementary Information
-
Patients who have been diagnosed or have a suspected onset of MS or other demyelinating disease are recruited.
Sample Size
- Number of Participants
- 2,500
Data Collection Events
| # | Name | Data sources | Data sources - Biosamples | Start | End |
|---|---|---|---|---|---|
| 0 | PeMSDD - Routine clinical visits |
|
2011 (May) | Ongoing |
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: 2020-04-03T11:42:30.608