While there has been extensive research on the diagnosis and management of Alport Syndrome, physicians with clinical experience treating individuals with Alport Syndrome tend to stay current with emerging research while physicians without prior exposure face a steep learning curve. Individuals living with Alport Syndrome can find themselves in the difficult position of having to inform or educate their physicians about the current research surrounding management and treatment of their condition. 

This, in turns, reinforces the expertise gap as patients seek providers with existing clinical experience. These disparities in clinical care and expertise can lead to inadequate and inconsistent standards of care for some patients.

Our project aims to address this issue by gathering insights and consensus from key experts and highly engaged patient advocates.  The research can then be used to promote a more standardized, evidence-based approach to Alport Syndrome care.

Our project investigates how people living with Type 1 diabetes understand their condition and how this influences their ability to cope, manage treatment, and maintain quality of life. Drawing on the Common Sense Model of self-regulation, we are examining the roles of illness perceptions, coping strategies, diabetes knowledge, psychological distress, diabetes management self-efficacy, and diabetes quality of life. Using structural equation modelling, the study will identify the pathways through which these factors interact and impact well-being with the goal of offering a roadmap to potential interventions to reduce distress, support self-care, and improve quality of life and long-term health for individuals living with Type 1 diabetes.

Our project seeks to examine how caregivers for children living with Alport Syndrome experience stress differently across key developmental stages of childhood and adolescence. By identifying patterns of stress and coping unique to each stage, we aim to better understand how a caregiver’s psychological needs changes as their child grows. This body of work will hopefully lay the groundwork for clinicians to be aware of how those stressors change and identify interventions to better support caregivers for children living with Alport Syndrome.