Glomerulonephritis (GN) is a group of rare diseases (<5 per 250,000 population) yet is a leading cause of kidney failure. There are few treatments for these conditions and no cures. Patients with GN need better access to new therapies to improve wellbeing and prevent kidney failure. The overarching goal of establishing the Toronto Glomerulonephritis Registry is to build a national effort to develop precise, personalized, patient-centered treatment strategies for patients with GN and to bolster GN-focused collaborative research capacity in Canada. This will be accomplished by creating a rigorous protocol to follow patients with GN across Canada using a new web-based clinical registry and federated biobank.
Dr. Heather Reich is the Scientific Director of the Toronto Glomerulonephritis Registry and leads the Canadian Glomerulonephritis Registry. Her translational research program focuses on elucidating the mechanisms responsible for the progression of kidney diseases towards kidney failure in immune-mediated diseases, with a focus on IgA nephropathy. This molecular work is complemented by studies to identify clinical risk factors for disease progression in glomerulonephritis. The Canadian Glomerulonephritis Registry will develop personalized treatments for patients with GN and identify new ways of detecting high-risk GN.
To do this, we will build upon an established research program to develop a collaborative national patient-centered program. We will expand a successful clinical database structure so it is available to the Canadian research community. We will study strategies for GN treatment that are tailored to a patient’s individual needs. We will look for specific genes and proteins that can help predict disease progression and whether an individual will benefit from innovative treatments. Once the infrastructure is ready and the protocol approved, we will begin recruitment of 350 patients with GN. Patients enrolled in our study will be seen every six months for blood tests and updates regarding their health and well-being.