Pediatric Multiple Sclerosis and other Demyelinating Diseases (PeMSDD)
The PeMSDD database is part of the United States Network of Pediatric Multiple Sclerosis Centers (NPMSC), which aims to improve the diagnosis and care of children with demyelinating diseases such as Multiple Sclerosis. The PeMSDD aims to describe the number and characteristics of pediatric patients with suspected early onset of demyelinating disease and to support hypothesis generation and study design development for clinical trials and observational studies to be carried out by the NPMSC. The PeMSDD includes over 3,000 patients with suspected onset of demyelinating disease of the central nervous system before the age of 18, who are 21 years of age or younger at the time of recruitment. Since 2011, data have been collected during routine clinical care until patients reach the age of 25 years.
Study design
Registry, Cohort - clinical, Cohort
Number of participants at first data collection
3,000 (participants)
Recruitment is ongoing
Age at first data collection
≤ 21 years (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
No
Sample features
Country
Year of first data collection
2011
Primary Institutions
University of Utah
Profile paper DOI
Funders
National Multiple Sclerosis Society
Ongoing?
Yes
Data types collected
- Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
- Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
- Secondary data
- Self-report questionnaire – online
- None
- Magnetic Resonance Imaging (MRI)
- Healthcare data
- Mortality data
Engagement
Keywords
