Improving the quality of life of Canadian children by developing more
effective treatments and research.
VANCOUVER, June 29, 2012 /CNW/ - Dr. Grace McCarthy, Chairman of the
Board of The Foundation for Children with Intestinal and Liver
Disorders (CH.I.L.D), today announced an important new partnership with
the Canadian Institutes of Health Research (CIHR) to fund the creation
of the Canadian Children Inflammatory Bowel Disease Network: A Joint
Partnership of CIHR and the CH.I.L.D. Foundation. The aim of this national research network and data platform is to
pursue a cure for Inflammatory Bowel Disease (IBD) in children and to
improve the quality of care for patients and their families who suffer
from these debilitating diseases.
"I am pleased that CH.I.L.D. is providing research funding for this
important challenge, and that our Government can partner with them to
support research for a cure," said the Honourable Leona Aglukkaq,
Minister of Health. "Many children and adolescents are affected by this
disease, and this partnership will help efforts to find better
treatments for them."
"This partnership is an historic one, which will for the first time in
Canada produce a framework to bring researchers and all stakeholders
together to work collectively with their focus on a cure for pediatric
IBD," said Dr. McCarthy. "It opens up opportunities to exchange
information with researchers, patients and families, hastening the cure
and providing better care on the way to finding the answers to these
diseases. This day we are grateful for the groundbreaking decision by
the Government of Canada to help us work towards a cure."
CIHR and CH.I.L.D. have launched a competition open to the best Canadian
researchers in the field to create a network of at least five centres
of pediatric IBD research expertise across the country. The national
network and data platform will help put in place a framework to share
the latest advances and best ideas in treating children with IBD, and
to apply them as promptly as possible in new treatment regimens built
on the principles of standardized high quality patient focused care.
The CH.I.L.D. Foundation was established in 1995 to fund research for
children who are stricken with Crohn's Disease, Ulcerative Colitis, and
liver disorders. We are a federally registered organization, and our
charitable tax number is BN 89897 4951 RR0001. We are fuelled by
dedicated volunteers and have created an unprecedented public
awareness, due in large part by donated support from the media and the
business community. The CH.I.L.D. Foundation has taken this severely
under-funded health issue in children and raised the profile to such an
extent that health providers and hospital leaders, as well as the
general public, are much more attentive to the needs of these
It has been seventeen years since Grace McCarthy, oc, obc, Lindsay Gordon, and Mary Parsons founded The CH.I.L.D. Foundation.
The Foundation has established the very first Endowed Chair in Canada
for Pediatric Gastroenterology Research at the University of British
Columbia and the first Endowed Program at B.C.'s Children Hospital.
We have built B.C.'s first research lab on the site of B.C.'s Children's
Hospital. It now has over twenty researchers and investigative staff
and they are receiving National recognition for their work. We will
launch a new initiative this year which employs all the latest
technologies such as the Internet and Bio-informatics. A grant from
the Government of British Columbia will allow us to initiate a
Collaborative Approach to finding a cure for I.B.D. This will be a
Canada-wide program. Imagine! All those in clinical and research
centres all working together to focus on finding the cure! A first in
Canada, this is the way of the future of research.
A total coordinated approach for care from bench research to bedside is
envisioned, where young patients have the benefit of a coordinated
approach from knowledgeable health care professionals and dedicated
The Canadian Institutes of Health Research (CIHR) is the Government of
Canada's health research investment agency. CIHR's mission is to create
new scientific knowledge and to enable its translation into improved
health, more effective health services and products, and a strengthened
Canadian health care system. Composed of 13 Institutes, CIHR provides
leadership and support to more than 14,100 health researchers and
trainees across Canada.
Inflammatory Bowel Disease and Children
Inflammatory bowel disease (IBD) is a group of diseases that includes
Crohn's disease and ulcerative colitis. Crohn's disease and ulcerative
colitis are distinctly different illnesses; however, they can produce
similar signs and symptoms and share many clinical characteristics,
including painful inflammation and ulceration of the gastrointestinal
tract, bloody diarrhea, nausea, vomiting, weight loss or gain, chronic
fatigue and anemia. The factors that trigger these diseases remain, to
a large extent, unclear.
Up to 25% of those with IBD will be diagnosed during childhood.
Moreover, preliminary data suggests that the incidence of pediatric IBD
is increasing, especially among children in certain ethnic communities.
Pediatric IBD has many characteristics that distinguish it from
adult-onset IBD, yet management of pediatric IBD has largely been based
on studies in adults, and important clinical questions remain
unanswered. Children with IBD live with pain. Partial removal of the
affected intestine is common and may be necessary more than once or
require more complicated operations. In some cases children as young as
five years of age must live with a colostomy or "bowel bag".
The burden on patients and their families with these disorders is high.
For children with IBD, especially Crohn's disease, normal growth and
skeletal development are often impaired. Moreover, children and
adolescents with IBD have relatively high rates of depression and
anxiety, in part, because of the waxing and waning course of their
chronic illness. Overall, pediatric-onset IBD often threatens the
capacity of the child to become a successful and productive adult.
There is no cure for these children; the disease follows them
throughout life with no reprieve.
The Canadian Children Inflammatory Bowel Disease Network: A Joint
Partnership of CIHR and CH.I.L.D. Foundation
The new Canadian Children Inflammatory Bowel Disease Network: A Joint
Partnership of CIHR and CH.I.L.D. Foundation will address health and health system research priorities by enhancing
patient-oriented care of children and adolescents suffering from bowel
diseases. It will also contribute to improving clinical results through
scientific and technological innovations and promotes health and
reduces the burden of chronic IBD and the consequent long-term mental
stress on these young patients.
Once in place, the Network will accelerate the capture of the health
benefits of health research by facilitating and strengthen partnerships
between researchers and knowledge users and by engaging stakeholders to
assist in setting the Network's health research agenda. A coordinated
approach for care from laboratory research to bedside is envisioned,
where young patients have the benefit of a coordinated approach from
knowledgeable health care professionals and dedicated research
The CH.I.L.D. Foundation will support the new research Network with $5
million in funding over five years.
CIHR will conduct a competition to identify a Network of the best
researchers and best ideas for pediatric IBD research. A key aspect of
the competition is a peer review process that will involve some of the
world's best researchers in this field. As well, CIHR will help set up
a Network Advisory Board that will include international experts,
funders, patient representatives, a provincial decision maker, industry
representatives, and relevant professional association representatives.
The Board will advise on strategic planning and evaluate the work of
the researchers in meeting the Network's goals.
SOURCE Canadian Institutes of Health Research
For further information:
David Coulombe, CIHR, 613-941-4563