$5 million investment in the Canadian Children Inflammatory Bowel Diseases Network: a joint partnership of CIHR and the CH.I.L.D Foundation

VANCOUVER, Oct. 18, 2013 /CNW/ - The Foundation for Children with Intestinal and Liver Disorders (CH.I.L.D) and the Canadian Institutes of Health Research (CIHR) are proud to announce a $5 million investment in the Canadian Children Inflammatory Bowel Disease Network, as a result of their joint partnership. The goals of this national Network and data platform include finding a cure for Inflammatory Bowel Diseases (IBD) in children and identifying means of prevention. Up to 25% of Canadian patients diagnosed with IBD, which is a group of diseases that includes Crohn's disease and ulcerative colitis, are children. Pediatric IBD has a number of characteristics that distinguish it from adult-onset IBD, and the Network will link leading scientists from 10 major academic institutions across seven provinces (BC, AB, MB, ON, QC, NS, and NL) to study pediatric IBD exclusively. In addition to the search for a cure, the Network will work toward improving the quality of care for current pediatric IBD patients (and their families), as well as uncovering the factors that make children susceptible to developing IBD.

"Canada has a very high incidence of pediatric IBD—in fact, it's one of the highest in the world," said Dr. Anne Griffiths, lead researcher for the Network at SickKids Research Institute in Toronto. "Together, researchers can tackle questions such as the reasons for the high prevalence of IBD in Canadian children; with collaboration from health care professionals, we can determine the best treatment strategies to heal bowel inflammation. Children should be allowed to grow and enjoy a happy childhood."

"IBD has to be managed every day—and it can be painful, debilitating, and even life-threatening. It can also cause many other health problems for those who have it," said Kyle Hadwin, an individual living with IBD since 1999. "It is inspiring to see great strides in research and clinical care that will support patients and their families from early childhood onto adulthood."

"This Network, the first of its kind in Canada to bring together top-ranking pediatric IBD researchers, is innovative and ground-breaking, with built-in stringent accountability structures and processes," said Dr. Grace McCarthy, O.C., O.C.B., Chairman of the Board for the CH.I.L.D. Foundation. "The partnership between the CH.I.L.D Foundation and CIHR to support this Network provides a unique infrastructure for state-of-the-art data collection, as well as an opportunity to conduct world-class research and drive excellence in clinical care."

"Canada is the perfect milieu for world-class research in pediatric IBD, with its high degree of ethnic variation, large population of immigrants from low-prevalence countries, high prevalence of IBD, and successful collaborative pediatric IBD research centres," said Dr. Philip Sherman, Scientific Director of the CIHR Institute of Nutrition, Metabolism and Diabetes. "CIHR is delighted to partner with the CH.I.L.D. Foundation to support this exceptional research that will provide a better quality of life for Canadian children living with IBD and will develop more effective treatments."

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 and provincially 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 now responsive to the needs of these children. 

It has been eighteen years since Grace McCarthy, oc, obc, Lindsay Gordon, and Mary Parsons co-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 for IBD research at B.C.'s Children Hospital in Vancouver. 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 that employs all the latest technologies such as Bio-informatics.  A grant from the Government of British Columbia will allow us to initiate a Collaborative Approach to finding a cure for IBD.  This will be a Canada-wide program.  Imagine!  All those in clinical and research centres working together to focus on finding the cure!  A first in Canada, this is the way of the future for 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.

Canada has one of the highest rates of IBD in the world, with over 200,000 Canadians suffering from the disease. Up to 25% of those with IBD will be diagnosed during childhood. As of 2000, there were nearly 5000 children under the age of 20 with IBD in Canada. Moreover, preliminary data indicate 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 IBD in children and teenagers 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 an ileostomy or "bowel bag".

The burden of these disorders is high for patients and their families. 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, due in part to the waxing and waning course of their chronic illness. Overall, pediatric-onset IBD threatens the capacity of the child to reach their full potential. There is no known cure for pediatric-onset IBD, despite important research advances that have been made to better understand the disease.

The Canadian Children Inflammatory Bowel Disease Network: A Joint Partnership of CIHR and CH.I.L.D. Foundation

The 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 help improve clinical results through scientific and technological innovations, promote health, and reduce the burden of chronic IBD and the resulting long-term mental stress on these young patients.

The Network will accelerate the capture of the benefits of this research by strengthening partnerships between researchers, caregivers, patients, and their families in setting the Network's health research agenda. A coordinated approach for translation of research findings from laboratory bench 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 research Network with $5 million in funding over five years.

CIHR's contribution includes having conducted a competition that identified a Network of the best researchers and best ideas for pediatric IBD research. A key aspect of that competition was a peer review process that involved some of the world's best researchers in this field. As well, CIHR is helping to establish a Network Advisory Committee to advise on strategic planning and to ensure that the Network achieves its intended goals.

The Network is composed of researchers working at 10 academic institutions across seven provinces.

The leadership team within the Network includes:

Anne Griffiths: Hospital for Sick Children, University of Toronto: Nominated Principal Investigator

David Mack: Children's Hospital of Eastern Ontario; University of Ottawa: Deputy Chair, Network Management Committee

Bruce Vallance: BC Children's Hospital, University of British Columbia: co-chair Scientific Committee

Aleixo Muise: Hospital for Sick Children, University of Toronto: co-chair Scientific Committee

Eric Benchimol: Children's Hospital of Eastern Ontario, University of Ottawa: Lead, Health Services Research and Quality Improvement

Thomas Walters: Hospital for Sick Children, University of Toronto: Lead, Data Management

SOURCE: Canadian Institutes of Health Research

David Coulombe, CIHR, 613-941-4563