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Unit 2E Stollery Children's Hospital

8440 112 St NW, Edmonton, AB T6G 2B7

pedsibd@ualberta.ca

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Current Research Projects 

Below you can see all research projects and initiatives that our EPIC team is currently involved in. 

 

There are plenty of groups in Alberta who are always looking for potential study participants. We encourage you to visit BETHECURE.CA to find out more about it

PEDIATRIC IBD REGISTRY

TYPE OF INITIATIVE: Quality Improvement Research

DESCRIPTION: Over the past three years, we have continued to use a clinical IBD registry that captures all the patients followed in our program and provides real-time, ongoing monitoring of key clinical markers. A comprehensive, standardized best practice, clinical care protocol for investigations and treatments was developed and processes to ensure easy and appropriate use of the protocols care pathways were built into our clinic workflow. This ensures that we are providing a consistent, high-quality level of care to all our patients and allows us to monitor important clinical outcomes as well as enable us to perform quality improvement research with our own data. The EPIC registry has embedded real-time links to continual process improvement and quality assurance metrics, which we have identified as key performance indicators for our clinic. Important markers of quality care such as the rates of hospitalization, surgery, sustained steroid-free remission, amongst others, are reviewed on an ongoing basis and enable continuous improvement as well as rapid identification of new and important clinical research questions for ongoing investigation. We have introduced several improvements to the registry, including a more efficient capture of medication data and a dashboard for monitoring trends in disease activity scores.         

 
TREAD IBD

FULL TITLE: Transition Readiness in Inflammatory Bowel Disease

TYPE OF INITIATIVE: Quality Improvement Research

DESCRIPTION: In this multicentre Canadian study, we will ask the participants, their parents and physicians to complete an online survey that will evaluate IBD patients’ readiness to transition from pediatric to adult care. The study was submitted to the ethics committee for approval; we anticipate to start the recruitment later this year. This project integrates readiness for transition with another project being developed in conjunction with our adult GI colleagues to facilitate better transfer of care with standardized information transfer and ongoing transition care beyond age 18 years.  

LEAD: Dr. Matthew Carroll.

 
PIBD-NET

FULL TITLE: Pediatric Inflammatory Bowel Diseases Network for Safety, Efficacy, Treatment and Quality Improvement of Care

TYPE OF INITIATIVE: Quality Improvement Research

DESCRIPTION: This multicentre international prospective registry established a national monitoring system for identifying patients with rare and serious complications of pediatric IBD and its treatments. We have recently received an ethics approval to proceed with the study; now, as a lead Canadian site, we will focus our efforts on helping other centres to obtain an approval and begin coordinating data reporting.  

LEAD: Dr. Matthew Carroll.

 
IBD Cost

FULL TITLE: Estimating disease-associated costs in pediatric inflammatory bowel disease: A Sub-study of the Canadian Children Inflammatory Bowel Disease Network

TYPE OF INITIATIVE: Quality Improvement Research

DESCRIPTION: It is well-recognized that IBD causes a significant financial burden on the economy, which is likely rising due to the increased prevalence of the disease and the increasing use of high-cost biologic medications, which are one of the common treatments for this condition. Disease-related costs in Canadian children with IBD have never been studied. Therefore, we will conduct a national Canadian study examining IBD-related health costs, a crucial step to plan for proper allocation of resources and for future health services for Canadian children with IBD.

LEAD: Dr. Hien Huynh

 
GEM

FULL TITLE: A multidisciplinary human study on the Genetic, Environmental and Microbial interactions that cause inflammatory bowel disease

TYPE OF INITIATIVE: Cohort Studies

DESCRIPTION: The Project design is a prospective cohort with a-priori hypotheses being tested utilizing a nested case-control design. Unaffected siblings of Crohn’s disease patients will be recruited and information on environmental exposures collected prospectively while simultaneously obtaining and storing biological samples on all Subjects within the cohort in a prospective manner. These Subjects will be followed for up to 6 years. When a “sufficient” number of Subjects have developed disease, a nested case-control sampling of this cohort will allow for a focused examination of the changes in microbial flora, intestinal permeability, and immune response to bacterial antigen (Ag) and immune regulation, in relation to expressed IBD susceptibility genes. Only in this way can we determine which pathogenic events that may have contributed to disease prior to disease development.

LEAD: Dr. Hien Huynh

 
DEVELOP

FULL TITLE: A Multicenter, Prospective, Long-term, Observational Registry of Pediatric Patients with Inflammatory Bowel Disease

TYPE OF INITIATIVE: Safety Registry

DESCRIPTION: The purpose of a pediatric inflammatory bowel disease (IBD) registry is to gain additional information on pediatric IBD following approval of the REMICADE® (infliximab), indication for Pediartic Crohn's Disease (CD) in the USA, Canada, and Europe. Results from this observational research study will be used to assist physicians in improving patient care with regard to clinical outcomes, and patient quality of life.

LEAD: Dr. Hien Huynh

 
CAPE

FULL TITLE: A Long-Term Non-Interventional Registry to Assess Safety and Effectiveness of HUMIRA® (Adalimumab) in Pediatric Patients with Moderately to Severely Active Crohn’s Disease

TYPE OF INITIATIVE: Safety Registry

DESCRIPTION: This global, multi-center registry study is designed primarily to capture long term safety data from individuals receiving Humira for moderately to severely active Crohn's disease. Patients being treated with conventional immunosuppressant therapy with no concurrent biologic medications will be enrolled as a reference group.  All participants must be between the ages of 6 and 17 at the time of study enrollment. 

LEAD: Dr. Hien Huynh

 
M-EEN

FULL TITLE: Modified Exclusive Enteral Nutrition with the Crohn’s Disease Exclusion Diet for Induction and Maintenance of Remission and Re-biosis; the DIETOMICS-CD trial

TYPE OF INITIATIVE: Clinical Trial

DESCRIPTION: Recently, researchers in Israel developed a new exclusion diet (Crohn’s disease exclusion diet, or CDED) that removes suspected dietary triggers of inflammation in CD. In a preliminary study in 47 patients treated with this dietary protocol, 70% of patients entered clinical remission after 12 weeks of this diet. The study, however, had a few limitations. First, some patients are too ill or refuse to eat food during the peak activity of their disease, which prevents them from following this exclusion diet. In these cases, EEN can be administered by tube directly into the stomach and may be easier to use in the anorectic or severe patient. The study also did not evaluate the ability to use diet to sustain Crohn disease remission achieved by dietary therapy during the first 8 weeks.

In this follow-up study, we want to show that induction of disease remission in Crohn disease patients and maintenance of remission can be achieved with a new dietary strategy that involves only 2 weeks of EEN with Modulen and 22 weeks of an exclusion diet involving selected table foods. We intend to compare the effects of dietary therapy on the gut microorganisms between patients using standard  EEN and free diet and those on modified EEN and CDED. We will also compare the changes in gut bacteria to healthy controls, siblings and parents.

LEAD: Dr. Eytan Wine 

 
Vedolizumab 
study

FULL TITLE: A Phase 2, Randomized, Double-Blind, Dose-Ranging Study to Determine the Pharmacokinetics, Safety, and Tolerability of Vedolizumab IV in Pediatric Subjects With Ulcerative Colitis or Crohn’s Disease

TYPE OF INITIATIVE: Clinical Trial

DESCRIPTION: This study will be looking if vedolizumab IV is safe and effective in pediatric IBD. It will be the first time vedolizumab is used in children. Vedolizumab belongs to a group of proteins called antibodies, which help to reduce inflammation that can cause the symptoms in CD and UC. It has been approved in Canada, United States and European Union for the treatment of adult patients with moderately to severely active UC or CD who have failed the conventional treatments.

LEAD: Dr. Hien Huynh

 
POPCORN Trial

FULL TITLE: Post-Operative Crohn's Disease Outcome in Children (The POPCORN trial): a prospective comparative non-interventional open study

TYPE OF INITIATIVE: Clinical Trial

DESCRIPTION: We have little data on the long-term outcome of pediatric CD patients following bowel resection. There is, however, evidence of a high risk of disease recurrence and additional surgeries in these children. Thus, a preventative strategy is usually required. The most common preventative medications for disease recurrence after ileocecal resection are classes of medication called thiopurines and anti-TNF alpha agents. Previous studies in adults have suggested that anti-TNF medicines might be better at lowering disease recurrence rates endoscopy results. These patients did not necessarily feel better than patients taking thiopurines. There are no similar studies looking at the effect of preventative therapies in children. In this study, we will try to find out whether anti-TNF medicines or thiopurines are better for children with CD who had a recent ileocecal resection. The study will be performed in multiple centers around the world and will include 100 children aged 6 years to 17 years diagnosed with CD following the first ileocecal resection. 

LEAD: Dr. Eytan Wine