Condition: Minimal Change Disease (MCD) · Membranous Nephropathy · Glomerulosclerosis, Focal Segmental · Sponsor: University of Michigan
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…
This description comes directly from the study's public registry record.
Chrysta C. Lienczewski, BS · 734-615-5021 · NEPTUNE-Study@umich.edu
Amanda Williams, BS · 734-615-5017 · NEPTUNE-Study@umich.edu
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| University of Southern California-Children's Hospital | Los Angeles, California, United States | Recruiting |
| Stanford University School of Medicine | Palo Alto, California, United States | Recruiting |
| University of California San Francisco Benioff Children's Hospitals | San Francisco, California, United States | Not Yet Recruiting |
| Lundquist Biomedical Research Institute at Harbor UCLA Medical Center | Torrance, California, United States | Recruiting |
| Children's Hospital Colorado | Aurora, Colorado, United States | Not Yet Recruiting |
| University of Colorado Anschutz School of Medicine | Aurora, Colorado, United States | Not Yet Recruiting |
| University of Miami Miller School of Medicine | Miami, Florida, United States | Recruiting |
| Emory University and Children's Healthcare of Atlanta | Atlanta, Georgia, United States | Recruiting |
| John Stroger Cook County Hospital | Chicago, Illinois, United States | Recruiting |
| University of Kansas Medical Center | Kansas City, Kansas, United States | Recruiting |
| Johns Hopkins Medical Institute | Baltimore, Maryland, United States | Recruiting |
| Kidney Disease Section, NIDDK, NIH | Bethesda, Maryland, United States | Completed |
+ 32 more locations — full list on the registry record.
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Source record: clinicaltrials.gov/study/NCT01209000