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Although
multiple sclerosis is considered an "adult disease" and is the most
common neurological disease affecting young to middle-aged adults,
better diagnostic tools now reveal that there are approximately
8,000-10,000 children who have multiple sclerosis, and another 10,000-15,000
who have experienced what may be symptoms of MS. This disease is
more difficult to diagnose in children and many pediatricians are
not familiar with MS, particularly since they are not expecting
to see it in children. Then even when diagnosed, consensus guidelines
for treatment exist only in relationship to adult MS, with none
for children, largely again because information about MS in children
is so scarce.
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As the leading private
funder of MS research, and because of the critical need to better understand
childhood MS, the National MS Society is establishing the first-of-its
kind network of Pediatric MS Centers of Excellence. These centers will
set the standard for pediatric MS care and offer optimal medical and psychosocial
support to children and their families. The centers will work with children
under 18 who have MS and other central nervous system demyelinating diseases.
The Society announced the establishment of the support for these first
six centers at its annual conference today in Atlanta before a group of
over 1,000 Society volunteers, staff leadership and people living with
MS.
Regional Pediatric
MS Centers of Excellence Set the Framework and Direction for
Pediatric MS Care and Research
Over the next five
years, the Society will invest $13.5 million in implementing these Pediatric
MS Centers of Excellence. The Society's commitment to launch and fund
these centers is part of its Promise: 2010 Initiative to support targeted
areas of research and patient care that hold great potential in the fight
to end the devastating effects of MS, but which have so far been under-explored.
The centers will be
established in geographically diverse regions around the country to treat
as many children as possible and will set the standard for comprehensive
care for pediatric MS, including medical
diagnosis and treatment,
rehabilitation, psycho-social issues and educational components. The centers
will also create the framework to conduct critical research—both
to understand childhood MS and to unlock the mysteries of MS in adults.
"One of the many challenges with pediatric MS is that because the disease
typically strikes adults, it may not be on the pediatrician's or even
a pediatric neurologist's radar screen as a possible diagnosis when a
child is experiencing MS-like symptoms," said Dr. John Richert, Vice President,
Research and Clinical Programs for the National MS Society. "By establishing
a network of Pediatric MS Centers of Excellence, our plan is to give the
medical community the tools they need to help identify and treat MS early
on. We also want to give families a range of resources that have not been
available previously to help them cope with the daily impact that MS has
on their lives."
While the primary
focus will be to develop a national model for pediatric MS treatment programs,
experts also consider research into childhood MS as a way of gaining more
insight into the basic causes of MS, which are believed to be a combination
of genetic factors and environmental triggers. "It is known that there
is a genetic component in MS and there are many genes that can make one
susceptible to the disease," said Dr. Lauren Krupp, Director of the National
Pediatric MS Center at Stony Brook University Hospital, and one of the
center awardees. "It might be easier to study both the genetic components
and identify environmental triggers inherent in MS within a child because
they have had much less exposure to outside influences than adults so
there might be less environmental 'noise' to sift through."
Nationwide
network to give treatment access to as many families as possible
Centers will be established in geographically diverse areas so
that they can serve as regional centers for as many children and families
living with MS as possible. They will be staffed by teams of pediatric
and adult MS experts who lead the field in MS diagnosis and treatment.
The Center locations are:
- Center for Pediatric-Onset
Demyelinating Disease at the Children's Hospital of Alabama , University
of Alabama at Birmingham—Project
director: Jayne Ness, MD, PhD
- Pediatric MS Center of the
Jacobs Neurological Institute, State University of New York at Buffalo—Project
director: Bianca Weinstock-Guttman, MD
- Mayo Clinic Rochester, Minnesota—Co-project
directors Nancy L. Kuntz, MD & Moses Rodriguez, MD
- National Pediatric
MS Center at Stony Brook University Hospital, Long Island—Project
director: Lauren Krupp, MD
- Partners Pediatric
MS Center at the Massachusetts General Hospital for Children in Boston—Project
director: Tanuja Chitnis, MD
- University of California
, San Francisco Regional Pediatric MS Center—Project
director Emmanuelle Waubant, MD, PhD
"We chose these sites
to be our first Pediatric MS Centers of Excellence because we believe
they will offer the greatest number of families access to essential resources.
What stands out at each of these centers is the caliber of the project
directors and their staffs. They are all top notch and will treat each
child with the individualized approach needed to best deal with this complicated
disease so we can learn why these children are getting MS and stop it
in its tracks," Dr. Richert continued.
The centers have committed
to sharing critical resources and collecting standardized data so that
each family at every center will get the same access and information.
Center directors will meet in person two-to-four times annually to discuss
advancements and share best practices.
Pediatric MS: Diagnosis and Treatment
Today, childhood MS is treated in the same way as adult MS, with
an eye toward adjusting dosages to this patient population's size and
weight. In addition to a range of interventions to treat the various symptoms
that can occur, there are four injectable disease-modifying drugs that
have been shown to alter the course of the disease. The medications have
been tested and approved for use by adults, but have not been systematically
studied for children. Currently, there are no consensus guidelines for
diagnosing or treating children and adolescents
Neurologists who treat
children with MS have reported, however, that many children develop cognitive
difficulties that may impact academic achievement. Some studies also indicate
that more young girls are diagnosed with MS than young boys, mirroring
a gender imbalance also seen in adults with the disease. "However, one
of the first areas that needs to be explored is the anecdotal evidence
suggesting that the profile of children with MS is inverse to the adult
profile, which is typically two-to-one Caucasian women to men. The children
with MS who we are seeing are more frequently from minority populations—African
American, Latino, Asian, Middle-Eastern," advises Dr. Krupp.
The centers will work
towards establishing diagnosis and treatment guidelines that will develop
standards and help improve disease management strategies for this under
18 population. "Not only do we have to educate pediatricians, neurologists
and the public that pediatric MS exists ," says Deborah Hertz, Director
of Medical Programs at the Society and project manager, "in many cases
we have to even update our diagnostic software because often when physicians
enter an MS diagnosis in the their computers for a pre-teen, they receive
an error message to the effect that "This can't be MS!"
Promise: 2010—Giving
people with MS a future to look forward to
rather than a past to look back upon
The establishment
of the nation's first network of Pediatric MS Centers Of Excellence is
one of the four key goals of the Society's Promise: 2010 Initiative. To
encourage innovative research into highly promising areas and to improve
MS medical care, the National MS Society launched Promise: 2010 , a nationwide
campaign to raise at least $30 million by 2010 for targeted areas of research
and patient care that hold great potential in the fight to end the devastating
effects of MS but which have so far been under-explored.
In
addition to the establishment of Pediatric MS Centers Of Excellence
, the Society has awarded $15.6 million for research
aimed at protecting the nervous system, reversing neurological damage
and restoring function in people with multiple sclerosis (these are the
largest awards ever made for this type of study). In addition, funds will
go towards the MS Lesion Project, an international pathology study seeking
to map and understand the different forms of MS damage seen in the brain
in order to develop better ways of treating people with MS; and the
Sonya Slifka Longitudinal MS Study, a nationwide database to examine the
impact of MS on people's lives. This $30 million-plus commitment is over
and above the Society's annual commitment of more than $35 million devoted
to over 300 MS research projects occurring around the world.
To support the Promise: 2010 Initiatives or for more information about
them, go to the Society's web site: main.nationalmssociety.org/promise2010.
To learn more about
pediatric MS, visit: main.nationalmssociety.org/PediatricMS
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