DOCHAS: Continuing to create hope for children with Inflammatory Bowel Disease

Paediatric inflammatory bowel disease (IBD) results in chronic inflammation of the gastrointestinal tract, and occasionally other organs. IBD can cause symptoms such as abdominal pain, bloody diarrhoea, fatigue, weight loss and malnutrition and negatively impacts quality of life.

                Figure 1: DOCHAS study*.

The two main subtypes are ulcerative colitis and Crohn’s disease. Ulcerative colitis results in inflammation of the lining of the colon (large bowel). The entire colon is involved in most young patients, in contrast with adult patients. Crohn’s Disease displays a different pattern of chronic inflammation which extends beyond the lining of the intestine, potentially affecting any segment of the intestine from the mouth to the anus. The incidence of inflammatory bowel disease in Irish children has trebled since 2001 and continues to rise, with over 120 new cases diagnosed each year.

The National Children’s Research Centre and Children Health Foundation Crumlin have made significant investments in Paediatric Inflammatory Bowel Disease research in Ireland. The focal point of this funding has been DOCHAS    (Determinants and Outcomes in CHildren and Adolescents with Inflammatory Bowel Disease), a study led by Prof. Séamus Hussey.

DOCHAS, the Irish word for hope, is a longitudinal clinical study that prospectively recruits all children and adolescents with newly diagnosed inflammatory bowel disease at Children’s Health Ireland (CHI) Crumlin and follows the progression of their disease and treatment outcomes through to adulthood.

Multipanel figure showing the effect of inflammatory bowel disease

Figure 2: The many facets of Inflammatory Bowel Disease: (Left to right) Top row: severe weight loss (Crohn’s Disease; CD); inflamed colon causing bleeding (Ulcerative Colitis; UC); painful skin rash – erythema nodosum – in CD. Bottom row: deep colonic ulcers in severe UC; MRI scan showing small bowel CD; deep ulcers in small bowel CD.

The Gastroenterology service in CHI Crumlin is the single referral centre for paediatric IBD in the Republic of Ireland placing it in the unique position of being able to capture the national picture of paediatric IBD in Ireland.

Séamus’ vision in developing DOCHAS was to bring together clinical and scientific expertise and foster high-impact collaborative research outputs that would benefit patients. The tandem approach of gathering robust clinical data and biological samples has established this unique prospective translational research platform, from which researchers can study factors that potentially cause, modify or treat inflammatory bowel disease, including factors that contribute to poor clinical outcomes and treatment failure.

Since DOCHAS started in 2012, over 1200 children have been recruited to the study. Throughout the course of their care, clinical data (e.g. treatment outcomes, disease complications, patient wellbeing) and biological samples (e.g. DNA, blood, gastrointestinal biopsies) are collected.

Thanks to the participation of patients and their families in the DOCHAS study, Séamus and his research team (current members include Dr. Sarah Cooper, Ms. Anna Dominik and Mr. Adhin John Varghese) have learned a lot about children with IBD in Ireland.

Major findings include:

  • Since the year 2000, the annual number of children diagnosed with IBD in Ireland has tripled. The number of children who are diagnosed under the age of 10 years is also increasing. Older children seem to have fewer flares.
  • In Ireland, an almost equal number of girls and boys are diagnosed with ulcerative colitis. On the contrary, there are 2.5 times as many boys as girls with Crohn disease.
  • More than half of children in Ireland who have IBD have Crohn disease.
  • One quarter of Irish children with IBD have someone else in their family who also has IBD, three quarters don’t.
  • Having previous tummy infections or previous antibiotics is no higher in children with IBD than other children.
  •  A new molecule has been identified that seems to drive inflammation in the gut of children with IBD. Researchers collaborating with DOCHAS are now testing if this molecule can be a new target of treatment.
  • We have helped to establish new criteria that doctors can look at in the weeks after diagnosis to identify children who are more likely to develop a disease flare.
  • We have shown that liquid feed therapies are better than steroids for inducing remission and maintaining growth in children diagnosed with mild to moderate Crohn disease.

The DOCHAS team also work with a number of academic collaborators in Trinity College Dublin, University College Dublin, and The Royal College of Surgeons in Ireland. Areas of focus include potential targets for future treatment and probing for potential differences in molecular pathways in patients with IBD relative to healthy control patients.

You can find additional information on some of these projects through the following links:

Novel therapies for paediatric inflammatory bowel disease

Validating a new drug target in intestinal fibrosis

Using diet to treat Crohn’s disease

*For anyone with suspected inflammatory bowel disease features, please attend your family doctor for initial assessment, and they will undertake investigations and referrals as appropriate.

Irish Society for Colitis and Crohn’s

*Figure 1 image attribution: This images incorporates”>Designed by brgfx / Freepik.