TY - JOUR
T1 - The US Network of Pediatric Multiple Sclerosis Centers
T2 - Development, Progress, and Next Steps
AU - Casper, T. Charles
AU - Rose, John W.
AU - Roalstad, Shelly
AU - Waubant, Emmanuelle
AU - Aaen, Gregory
AU - Belman, Anita
AU - Chitnis, Tanuja
AU - Gorman, Mark
AU - Krupp, Lauren
AU - Lotze, Timothy E.
AU - Ness, Jayne
AU - Patterson, Marc
AU - Rodriguez, Moses
AU - Weinstock-Guttman, Bianca
AU - Browning, Brittan
AU - Graves, Jennifer
AU - Tillema, Jan Mendelt
AU - Benson, Leslie
AU - Harris, Yolanda
N1 - Funding Information:
This study, funded by the National Multiple Sclerosis Society, includes patients with suspected onset of demyelinating disease of the central nervous system prior to age 18. The purposes of the database are to describe the number and characteristics of 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 Network. Information is collected and entered into a web-based electronic data capture system. Categories of data elements collected are enrollment, registration (demographics, family and medical history, vaccinations), history of disease (medications, blood tests, other biological samples, MRIs), clinic visits (diagnosis, Neurostatus expanded disability status scale, growth), events/relapses (symptoms, localization, disease onset), and neuropsychological testing. Important features of the registry include (a) uniformity in data collection and submission, (b) careful monitoring of the data and queries for data discrepancies, and (c) a process for access to individual center data for Network investigators, among others.
Funding Information:
The United States Network of Pediatric Multiple Sclerosis Centers is now established as an independent entity with research support from the National Multiple Sclerosis Society, National Institutes of Health, and the Guthy-Jackson Charitable Foundation. The Network has developed and defined the structure and functions to facilitate multicenter research. The Network has established 4 central research priorities. Ongoing studies include the core Pediatric Multiple Sclerosis and Other Demyelinating Diseases database, Environmental and Genetic Risk Factors, Microbiomes and NMO Spectrum projects. These projects should help define the nature of pediatric demyelinating diseases and begin to define the pathogenesis of these diseases. Multiple additional concepts and proposals are in development. Future objectives are to (1) foster a productive pipeline of funded research addressing the established priorities, (2) develop pathways for development of new investigators, and (3) expansion of the Network to facilitate its research, clinical care, and educational missions. Acknowledgments
Funding Information:
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the National Multiple Sclerosis Society (HC 0165). Current projects are funded by the National Institutes of Health (R01NS071463), the National Multiple Sclerosis Society (RG 4861A13), and the Guthy-Jackson Charitable Foundation (Eureka Grant).
Publisher Copyright:
© SAGE Publications.
PY - 2015/9/18
Y1 - 2015/9/18
N2 - Multiple sclerosis and other demyelinating diseases in the pediatric population have received an increasing level of attention by clinicians and researchers. The low incidence of these diseases in children creates a need for the involvement of multiple clinical centers in research efforts. The Network of Pediatric Multiple Sclerosis Centers was created initially in 2006 to improve the diagnosis and care of children with demyelinating diseases. In 2010, the Network shifted its focus to multicenter research while continuing to advance the care of patients. The Network has obtained support from the National Multiple Sclerosis Society, the Guthy-Jackson Charitable Foundation, and the National Institutes of Health. The Network will continue to serve as a platform for conducting impactful research in pediatric demyelinating diseases of the central nervous system. This article provides a description of the history and development, organization, mission, research priorities, current studies, and future plans of the Network.
AB - Multiple sclerosis and other demyelinating diseases in the pediatric population have received an increasing level of attention by clinicians and researchers. The low incidence of these diseases in children creates a need for the involvement of multiple clinical centers in research efforts. The Network of Pediatric Multiple Sclerosis Centers was created initially in 2006 to improve the diagnosis and care of children with demyelinating diseases. In 2010, the Network shifted its focus to multicenter research while continuing to advance the care of patients. The Network has obtained support from the National Multiple Sclerosis Society, the Guthy-Jackson Charitable Foundation, and the National Institutes of Health. The Network will continue to serve as a platform for conducting impactful research in pediatric demyelinating diseases of the central nervous system. This article provides a description of the history and development, organization, mission, research priorities, current studies, and future plans of the Network.
KW - NPMSC
KW - demyelinating disease
KW - multicenter research
KW - multiple sclerosis
KW - network
UR - http://www.scopus.com/inward/record.url?scp=84939525925&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84939525925&partnerID=8YFLogxK
U2 - 10.1177/0883073814550656
DO - 10.1177/0883073814550656
M3 - Article
C2 - 25270659
AN - SCOPUS:84939525925
SN - 0883-0738
VL - 30
SP - 1381
EP - 1387
JO - Journal of child neurology
JF - Journal of child neurology
IS - 10
ER -