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Without treatment, Nephrotic Syndrome may result in kidney failure and the need for dialysis or kidney transplantation for a patient. Imagine if UHN could gain a greater understanding of the progression of this syndrome and what treatments work best for our patients.
Researchers at UHN and the University of Toronto will collaborate with 12 other leading academic nephrology units in the USA to form the Nephrotic Syndrome Rare Disease Consortium, and help lead a $10.25 million effort to study kidney disease over the next five years.
Nephrotic Syndrome constitutes up to 12 per cent of all kidney failure cases in Canada. It is not a single condition but is caused by a group of kidney diseases that damages the kidney's filtering system. Swelling in the legs, feet and face are the most common signs of Nephrotic Syndrome.
This swelling (or edema) can be so severe in some patients, that it affects their mobility, and in some cases, prevents them from doing their daily activities. It can even affect the lining up the stomach and decrease of necessary nutrients, leading to muscle weakness and general fatigue. Most people with Nephrotic Syndrome don't show any signs of the condition until the swelling begins.
UHN's Division of Nephrology sees many patients with this syndrome and has long been recognized nationally and internationally for its research focused on both the cause and treatment for this condition.
"We aim to improve the treatment for our patients, improve their quality-oflife and prevent the need for dialysis or kidney transplantation," says Dr. Daniel Cattran, chair of the steering committee for the consortium, and a nephrologist at UHN.
Participation in the consortium provides an opportunity to gain a greater understanding of the underlying causes of the condition, and what happens over time to people with Nephrotic Syndrome across a broad North American population. A goal is to take this new knowledge and use it to devise new treatments for these patients.
Additionally, this project will strengthen UHN's links to GTA kidney specialist; UHN has the infrastructure to initiate this project, and in turn share what is learned with both the local and international medical community. Dr. Cattran and his colleagues aim to extend this project to other University-affiliated hospitals and community nephrologists in the GTA, and talks with community leaders in nephrology have already begun.
Other investigators at UHN who play crucial roles in the consortium include Dr. Heather Reich, who expects to extend her pioneering work on the molecular mechanisms involved with Nephrotic Syndrome through her participation in the consortium's basic scientific and urinary proteomics committee. This work will be crucial in the development of new, targeted treatments for this condition. Dr. Andrew Herzenberg, a UHN leader in pathology research in glomerulonephritis (a type of kidney disease that commonly produces Nephrotic Syndrome) will also participate in the consortium through an important role in the renal pathology protocol committee. Dr. Michelle Hladunawich, a nephrologist cross-appointed at both UHN and Sunnybrook Hospital will be instrumental in bringing the research to the bedside through her active role in the clinical project in the consortium and through her role as a leader in the nephrotic syndrome/ GN clinic at UHN.
The consortium also includes two highly active patient-interest groups — the NephCure Foundation, and the Halpin Foundation — whose agencies will work closely with researchers, and provide a patient with an educational link to the consortium. Both groups were involved in the design of the study itself, and will be critically relevant to the development of a website and a public registry for patients affected with this condition. Their aim is to provide not only a website for patient education on kidney disease, but also to provide information about the study and how to join the consortium in the fight against kidney disease.
Funding for the project comes from: the National Institutes of Health, Office of Rare Diseases; the National Institutes of Diabetes, Digestive and Kidney Disease; the NephCure Foundation; and the University of Michigan.