Current Research Projects

Transition Navigator Trial 

Dr. Mackie is co-leading the Transition Navigator Trial with Dr. Susan Samuel and Dr. Gina Dimitropolous, both of the University of Calgary. 

Study Coordinator: Daniella San Martin-Feeney; daniella.sanmartin-feeney@ahs.ca 

Approximately 15-20% of adolescents in North America live with a chronic health condition, and the majority (>90%) will require transfer from pediatric to adult oriented services. Many patients and families are unprepared for transfer, struggle to adapt to adult health care settings, and report difficulties accessing needed services to manage their health conditions into adulthood. The Transition Navigator Trial is a pragmatic randomized controlled trial (RCT) of a patient navigator service versus usual care, aimed at adolescents aged 16-21 years to address modifiable barriers to successful transfer of care and gather qualitative information for future components of this study.  Click here to learn more about this province-wide trial. 

Physical Activity Toolkit

Dr. Mackie is a co-investigator on this clinical trial, led by Dr. Patricia Longmuir of the Children’s Hospital of Eastern Ontario. 

Study Coordinator: Alyssa Chappell; amc12@ualberta.ca 

Many children with congenital heart disease are limited in their abilities to participate in physical activity due to the uncertainty about appropriate types of physical activity. The American Heart Association has recognized the impact of uncertainty, recommending that physical activity importance be emphasized through counselling during ever clinical encounter. This study is to evaluate the impact of physical activity counselling on children with CHD and on the clinical resources used to provide their care. We will evaluate whether this counselling using clinical resources can enhance participation, motivation and skill or quality of life among children. 

PhiT

Dr. Mackie is a co-investigator on this clinical trial, led by Dr. Isablle Vonder Muhll of the University of Alberta Hospital and Mazankowski Alberta Heart Institute. 

Study Coordinator: Alyssa Chappell; amc12@ualberta.ca 

Activity levels and exercise ability of congenital heart patients are lower than normal which affects quality of life and ability to work. Cardiac rehabilitation with exercise therapy is often recommended for patients who have had a heart attack, but is not routinely available for CDH patients. As little is known about the type of exercise regimen or the effect exercise has on these patients, there is a need to identify the optimal training method that is tolerable and results in the greatest adherence and increase in exercise capacity. This study will determine the impact of interval training, compared to moderate continuous exercise versus controls (no exercise) on exercise capacity and to assess the safety of exercise training in CHD, evaluate the effect of exercise training on cardiac structure and function and to assess the effects of exercise training on QOL and long-term physical activity. 

Fontan Renal Study

Dr. Mackie is a co-investigator on this clinical trial, led by Dr. Jasmine Grewal of the University of British Columbia. 

Study Coordinator: Rae Foshaug; rae.foshaug@ahs.ca 

1 in 3000 children is born with a single ventricle. These children are able to survive to adulthood as a result of a surgery call the Fontan which creates an artificial path for de-oxygenated blood to travel to the lungs, leaving the single pump to send oxygenated blood to the body. These patients however are developing many issues in adulthood due to the abnormal circulation and subsequent involvement of other organs including the liver and kidneys. In order to develop appropriate therapies to improve outcomes, we need to understand the kidney function in this population. Fontan patients will be asked to complete a number of blood and urine tests over time in order to document the prevalence of kidney dysfunction.

ReadyorNotTM  CHD

Dr. Mackie is co-leading this study with Dr. Adrienne Kovacs and Dr. Ariane Marelli (McGill Adult Unit for Congenital Heart Disease Excellence). Dr. Gina Dimitropoulos (University of Calgary) is leading the qualitative portion of this study.

General contact: chdapp@ualberta.ca

Study Coordinator: Daniella San Martin-Feeney; daniella.sanmartin-feeney@ahs.ca 

The READYorNotTM Congenital Heart Disease Trial is a research study designed to help teens move successfully from pediatric to adult cardiology care. This study is being done at 4 children's hospitals across Canada: BC Children's Hospital (Vancouver), Stollery Children's Hospital (Edmonton), SickKids (Toronto), and CHU Ste. Justine (Montreal).  This research study will test if using an app to learn about their heart condition will help teenagers prepare for entering the adult healthcare system. Learn more at www.chdappstudy.com 

TRACC

Dr. Mackie is co-leading this study with Dr. Gwen Rempel (Athabasca University), Dr. Adrienne Kovacs (iHeartchange founder, Oregon Health & Science University), and Jody Gingrich (Transition RN, Stollery Children's Hospital).

Study Coordinator: Alyssa Chappell; amc12@ualberta.ca 

The Transitioning Rural Adolescents to Adult Care (TRAAC) Study is a mixed-methods prospective cohort study evaluating the impact of a Telehealth-based nurse-led transition intervention in combination with access to a CHD website, on preparing rural-based adolescents living with congenital heart disease (CHD) to successfully transition from pediatric to adult cardiology care. This research has been funded by the generous support of the Stollery Children's Hospital Foundation through the Women and Children’s Health Research Institute. 

Immigrant Youth Transition Study

Dr. Mackie is co-leading this study with Dr. Michael Kariwo (Faculty of Nursing, University of Alberta), Siccida Ibrahim (Research Assistant, Faculty of Nursing, University of Alberta), and Mia Tulli (Research Assistant, Faculty of Nursing, University of Alberta).

Study Coordinator: Alyssa Chappell; amc12@ualberta.ca 

The Immigrant Youth Transition (IYT) Study is a cross-sectional, mixed methods study investigating the transition from pediatric to adult healthcare for immigrant youth and their parents/guardians/caregivers using qualitative methods of individual interviews, focus groups, and a stakeholder symposium.  This study is funded by the Distinguished Researcher Program of the Women and Children’s Health Research Institute, and made possible by the generosity of the Stollery Children’s Hospital Foundation. 

Indigenous Youth Transition Study

Study Coordinator: Alyssa Chappell; amc12@ualberta.ca 

Dr. Mackie is collaborating with the Maskwacis Health Center and the Stollery Awasisak Indigenous Health Program to engage transition-age Indigenous youth living with chronic health conditions, and their families. The purpose of this research program is to a) identify barriers and facilitators of pediatric to adult transition among adolescents living in the Maskwacis community, and 2) to subsequently evaluate possible interventions to improve the process of transition and access to adult specialty services for this at-risk population.  A Community-Based Participatory Research approach is being taken. This study is funded by the Distinguished Researcher Program of the Women and Children’s Health Research Institute, and made possible by the generosity of the Stollery Children’s Hospital Foundation.