December 4, 2000
The Hospital for Sick Children established Canada's first national registry to track Multiple Sclerosis in children
North America’s first paediatric MS clinic continues commitment to understanding
disease
The Hospital for Sick Children (SickKids) has developed a national registry that will track the progression
of multiple sclerosis (MS) in children, allowing researchers to better understand paediatric MS. The data
gathered will also be used to design future trials for the evaluation of the efficacy and safety of therapies
in this important patient population. The registry will become an integral component of the hospital’s
recently established paediatric MS clinic, which is the first of its type in North America.
"This database is essential for determining the incidence of paediatric-onset multiple sclerosis in
Canada, for studying the epidemiological features of this population, and for understanding the clinical
features, severity, and progression of MS in children," says Dr. Brenda Banwell, SickKids neurologist and
head of SickKids’ MS clinic. "Until now, a major stumbling block in our research has been the relative
rarity of paediatric multiple sclerosis and the absence of formal collaboration between physicians treating
these children."
Recent studies demonstrate the importance of early initiation and long-term use of therapy for people with multiple sclerosis. Although several promising therapies currently exist for the treatment of MS in adults, these treatments
have not yet been prospectively studied in children.
"We’re very hopeful that setting up this national resource will allow us to develop a group of paediatric
patients large enough for involvement in clinical trials of disease-modifying agents," continues Dr. Banwell. "Additionally, by understanding patients with the earliest onset of the disease, we may actually be able to shed valuable
light on the causes of multiple sclerosis."
Funding from Teva Marion Partners Canada (TMPC), manufacturers of the MS drug Copaxone, was
used to establish the registry, which will be based at The Hospital for Sick Children in Toronto. The
database will also enrol patients from the 16 major paediatric hospitals and from specialised
MS treatment centres across Canada. The clinic has already enrolled 18 children with clinically definite
multiple sclerosis, and follows more than 20 children in whom a single episode of acute central nervous
system demyelination has occurred. Demyelination takes place when myelin – the substance that
surrounds the fibres in the nervous system – is attacked, interrupting nerve impulses to and from the
brain. If a second demyelinating episode occurs, these children will be classified as having multiple
sclerosis.
"Dr. Banwell is truly a leader in providing a bench-to-bedside approach to the study and care of
children with multiple sclerosis," says John Hassler, general manager, Teva Marion Partners Canada.
"As a company dedicated to the total management of multiple sclerosis, we are very excited about
supporting her efforts to better understand the disease in children."
Multiple Sclerosis affects almost 50,000 Canadians. Studies suggest that out of the 1,500 people
who are diagnosed with MS in Canada each year, approximately 45 are in the paediatric age group
(under 16 years of age). In most cases, paediatric onset multiple sclerosis cases are treated by paediatric
neurologists with limited experience in MS, or by adult neurologists in MS centres specializing in the
care of adults with MS.
The Hospital for Sick Children is a health care, teaching and research centre dedicated exclusively to
children; affiliated with the University of Toronto. Its mission is to provide the best in family-centred,
compassionate care, to lead in scientific and clinical advancement, and to prepare the next generation
of leaders in child health.
For more information, please contact:
Laura Greer, Public Affairs
The Hospital for Sick Children
(416) 813-5046
Annette Faynwachs
Fleishman Hillard
(416) 214-0701 ext. 274
Public Affairs
The Hospital for Sick Children
555 University Avenue
Suite 1742, Public Affairs, First floor Atrium
Toronto,
ON
M5G 1X8
Canada
Phone: 416-813-5058
Fax: 416-813-5328