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.
Socioeconomic burden
study
FULL TITLE: Exploring the socioeconomic burden on families in pediatric inflammatory bowel disease
TYPE OF INITIATIVE: Observational, quality improvement
DESCRIPTION: This study hopes to better understand the socioeconomic burden of pediatric IBD on families at our centre. This will occur through separate surveys of patient families and pediatric IBD care providers across the country. Results from this study will provide more information on the financial burden of IBD to improve socioeconomic support for families. In addition, by surveying pediatric IBD providers across the country, our local care practices can be compared nationally to other centers. Altogether, based on study findings, quality improvement initiatives may be developed to improve future clinical practices at our centre. All patient/family participants must be followed at the Edmonton Pediatric IBD Clinic and have been diagnosed with IBD for greater than 6 months at the start of the study. The survey will take approximately 5-10 minutes to complete.
LEAD: Dr. Matthew Carroll, Dr. Tejas Desai
ETHICS ID: Pro00121061
Survey Link: https://redcap.ualberta.ca/surveys/?s=EWT4NHPL7YRA8YL9
Survey QR Code:
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
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
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