Nephrotic Syndrome Study Network
Recruiting now
Conditions studied: Minimal Change Disease (MCD), Membranous Nephropathy, Glomerulosclerosis, Focal Segmental
In brief
Minimal change disease (MCD), focal segmental glomerulosclerosis (FSGS), and Membranous nephropathy (MN), generate an enormous individual and societal financial burden, accounting for approximately 12% of prevalent end stage renal disease (ESRD) cases (2005) at an annual cost in the US of more than $3 billion. However, the clinical classification of these diseases is widely believed to be inadequate by the scientific community. Given the poor understanding of MCD/FSGS and MN biology, it is not surprising that the available therapies are imperfect. The therapies lack a clear biological basis, and as many families have experienced, they are often not beneficial, and in fact may be significantly toxic. Given these observations, it is essential that research be conducted that address these serious obstacles to effectively caring for patients. In response to a request for applications by the National Institutes of Health, Office of Rare Diseases (NIH, ORD) for the creation of Rare Disease Clinical Research Consortia, a number of affiliated universities joined together with The NephCure Foundation the NIDDK, the ORDR, and the University of Michigan in collaboration towards the establishment of a Nephrotic Syndrome (NS) Rare Diseases Clinical Research Consortium. Through this consortium the investigators hope to understand the fundamental biology of these rare diseases and aim to bank long-term observational data and corresponding biological specimens for researchers to access and further enrich.
Key facts
- Study ID
- NCT01209000
- Run by
- University of Michigan
- People needed
- 1200
- Starts
- 2010-04-01
- Expected to finish
- 2030-12-31
- Last updated by the study team
- 2026-06-10
Who can join
Age: any, up to 80. Sex: any. Healthy volunteers: not accepted.
Where it is running
- University Health Network — Toronto, Ontario, Canada (enrolling)
- Stanford University School of Medicine — Palo Alto, California, United States (enrolling)
- University of Pennsylvania — Philadelphia, Pennsylvania, United States (enrolling)
- Temple University — Philadelphia, Pennsylvania, United States (enrolling)
- Medical University of South Carolina — Charleston, South Carolina, United States (enrolling)
- University of Texas-Southwestern — Dallas, Texas, United States (enrolling)
- Texas Children's Hospital - Baylor College of Medicine — Houston, Texas, United States (enrolling)
- Seattle Children's Hospital — Seattle, Washington, United States (enrolling)
- University of Washington — Seattle, Washington, United States (enrolling)
- Providence Medical Research Center — Spokane, Washington, United States (enrolling)
- Credit Valley Hospital — Toronto, Ontario, Canada (enrolling)
- Sunnybrook Hospital — Toronto, Ontario, Canada (enrolling)
- University of Southern California-Children's Hospital — Los Angeles, California, United States (enrolling)
- Lundquist Biomedical Research Institute at Harbor UCLA Medical Center — Torrance, California, United States (enrolling)
- University of Miami Miller School of Medicine — Miami, Florida, United States (enrolling)
- Emory University and Children's Healthcare of Atlanta — Atlanta, Georgia, United States (enrolling)
- John Stroger Cook County Hospital — Chicago, Illinois, United States (enrolling)
- University of Kansas Medical Center — Kansas City, Kansas, United States (enrolling)
- Johns Hopkins Medical Institute — Baltimore, Maryland, United States (enrolling)
- CS Mott Children's Hospital, University of Michigan — Ann Arbor, Michigan, United States (enrolling)
- University of Michigan Medical Center — Ann Arbor, Michigan, United States (enrolling)
- Children's Mercy Hospital — Kansas City, Missouri, United States (enrolling)
- Cohen Children's Hospital — New Hyde Park, New York, United States (enrolling)
- New York University Medical Center — New York, New York, United States (enrolling)
- Bellevue Hospital — New York, New York, United States (enrolling)
Full record on ClinicalTrials.gov
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