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RECRUITING
NCT01209000

Nephrotic Syndrome Study Network

Sponsor: University of Michigan

View on ClinicalTrials.gov

Summary

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.

Official title: Nephrotic Syndrome Study Network Under the Rare Diseases Clinical Research Network

Key Details

Gender

All

Age Range

Any - 80 Years

Study Type

OBSERVATIONAL

Enrollment

1200

Start Date

2010-04

Completion Date

2029-06-30

Last Updated

2025-04-24

Healthy Volunteers

No

Interventions

PROCEDURE

Kidney Biopsy

Patients scheduled to undergo a clinically indicated kidney biopsy will be requested to consent to an additional renal core, to be set aside until all clinical care is complete.

Locations (44)

University of Southern California-Children's Hospital

Los Angeles, California, United States

Stanford University School of Medicine

Palo Alto, California, United States

University of California San Francisco Benioff Children's Hospitals

San Francisco, California, United States

Lundquist Biomedical Research Institute at Harbor UCLA Medical Center

Torrance, California, United States

Children's Hospital Colorado

Aurora, Colorado, United States

University of Colorado Anschutz School of Medicine

Aurora, Colorado, United States

University of Miami Miller School of Medicine

Miami, Florida, United States

Emory University and Children's Healthcare of Atlanta

Atlanta, Georgia, United States

John Stroger Cook County Hospital

Chicago, Illinois, United States

University of Kansas Medical Center

Kansas City, Kansas, United States

Johns Hopkins Medical Institute

Baltimore, Maryland, United States

Kidney Disease Section, NIDDK, NIH

Bethesda, Maryland, United States

CS Mott Children's Hospital, University of Michigan

Ann Arbor, Michigan, United States

University of Michigan Medical Center

Ann Arbor, Michigan, United States

Mayo Clinic

Rochester, Minnesota, United States

Children's Mercy Hospital

Kansas City, Missouri, United States

Washington University - St Louis

St Louis, Missouri, United States

Cohen Children's Hospital

New Hyde Park, New York, United States

New York University Medical Center

New York, New York, United States

Bellevue Hospital

New York, New York, United States

New York University Veterans Administration

New York, New York, United States

Columbia University Medical Center

New York, New York, United States

Montefiore Medical Center

The Bronx, New York, United States

University of North Carolina at Chapel Hill

Chapel Hill, North Carolina, United States

Atrium Health Levine Children's Hospital

Charlotte, North Carolina, United States

Wake Forest School of Medicine

Winston-Salem, North Carolina, United States

University Hospital Rainbow Babies & Children's Hospital

Cleveland, Ohio, United States

MetroHealth Hospital at Case Western Medical Center

Cleveland, Ohio, United States

Cleveland Clinic

Cleveland, Ohio, United States

The Ohio State University Wexner Medical Center

Columbus, Ohio, United States

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Temple University

Philadelphia, Pennsylvania, United States

Medical University of South Carolina

Charleston, South Carolina, United States

University of Texas-Southwestern

Dallas, Texas, United States

Texas Children's Hospital - Baylor College of Medicine

Houston, Texas, United States

Seattle Children's Hospital

Seattle, Washington, United States

University of Washington

Seattle, Washington, United States

Providence Medical Research Center

Spokane, Washington, United States

York Central Hospital

Richmond Hill, Ontario, Canada

Scarborough Hospital

Scarborough Village, Ontario, Canada

Credit Valley Hospital

Toronto, Ontario, Canada

Sunnybrook Hospital

Toronto, Ontario, Canada

University Health Network

Toronto, Ontario, Canada