A New Partnership to Advance Rare Kidney Disease Research
The Kidney Foundation of Canada (KFOC) is proud to announce a new research partnership with the Alport Syndrome Foundation (ASF) that advances our shared commitment to patient-driven kidney research and meaningful change for people living with rare kidney diseases. Through the generous support of the Pedersen Alport Syndrome Research Fund, The Kidney Foundation is investing $50,000USD to support the NEPTUNE Alport Ancillary Study, a natural history study focused on better understanding Alport syndrome over time.
“This partnership reinforces The Kidney Foundation of Canada’s commitment to patient-informed research that improves outcomes in kidney disease. By working together with the Alport Syndrome Foundation and the NEPTUNE network, we are investing in research that not only advances scientific understanding, but also brings us closer to better, more personalized care for patients and families affected by Alport syndrome.” - Leanne Stalker, Director of Research for The Kidney Foundation of Canada.
NEPTUNE (Nephrotic Syndrome Study Network) is a long-standing research consortium designed to advance a better understanding of specific kinds of kidney diseases, particularly those characterized by symptoms that indicate damage to the kidney’s filtering units (glomeruli). Based out of the University of Michigan, NEPTUNE has collected detailed clinical, genetic, and biological data from patients across many medical centers in the U.S. for more than 15 years and has recently expanded to include a site in Toronto, Ontario.
The Kidney Foundation has a long-standing commitment to patient driven and collaborative kidney research, and this partnership will accelerate understanding of Alport syndrome and support research that leads to real world improvements for patients and families.
The Alport Ancillary Study, funded by ASF, focuses on gathering detailed, long-term data on how the disease progresses over three years in 72 patients ranging in age, genetic type, and stage of disease. This study collects whole genome sequencing, kidney function measurements, hearing assessments, and more. Building and sustaining this dataset with bio-samples is essential for understanding the disease and for supporting the development of new treatments.
Each data point and biospecimen from every individual participant is valuable. ASF is grateful to the individuals participating in this study, and for their continued dedication to seeing it through the entire patient community.
As co-principal investigator of the study, Dr. Alessia Fornoni notes, “The ultimate goal of natural history studies is to secure that the right patient gets the right drug at the right time. At this time when so many companies are investing in developing drugs for Alport syndrome, natural history studies will derisk drug development by promoting an innovation strategy focused on ‘patient to bench and back.’” This allows researchers to learn from patients, study what they find in the lab, and use that knowledge to develop better treatments for people.
This research involves many different scientific experts, secure data systems, equipment, coordination across facilities, and storage of bio-samples – all requiring significant collaboration, infrastructure, and resources to support its success.
This partnership reflects the Foundation’s mission to improve the lives of people living with kidney disease by supporting high-quality research and ensuring that patient experiences help shape scientific discoveries. By joining forces with ASF and the NEPTUNE research network, The Kidney Foundation is extending its impact beyond national borders while strengthening opportunities for Canadian patients, clinicians, and researchers to contribute to, and benefit from leading international kidney research efforts.