Fact Sheet - Inflammatory Bowel Disease and Children

[ Press Release 2012-32 ]

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.