CH.I.L.D. Foundation and CIHR launch Pediatric Inflammatory Bowel Disease Research Network

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 children. 

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 research scientists. 

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.

Fact Sheet

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 scientists.

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.

For further information:

David Coulombe, CIHR, 613-941-4563