Nephrotic Syndrome Study Network

ClinicalTrials.gov ID: NCT01209000

Public ClinicalTrials.gov record NCT01209000. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.

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ClinicalTrials.gov public records Last synced Sep 6, 2026, 12:33 PM EDT

Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.

Official title

Nephrotic Syndrome Study Network Under the Rare Diseases Clinical Research Network

Brief summary

Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.

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.

Study identification

NCT ID: NCT01209000
Recruitment status: Recruiting
Study type: Observational
Phase: Not listed
Lead sponsor: University of Michigan; Other
Enrollment: 1,200 participants

Conditions and interventions

Conditions

Interventions

Kidney Biopsy Procedure

Procedure

Eligibility (public fields only)

Age range: Up to 80 Years
Sex: All
Healthy volunteers: Healthy volunteers not accepted

This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.

Study timeline

Start date: Mar 31, 2010
Primary completion: Dec 30, 2030
Completion: Dec 30, 2030
Last update posted: Jun 9, 2026

2010 – 2030

United States locations

U.S. sites: 39
U.S. states: 17
U.S. cities: 29

Facility	City	State	ZIP	Site status
University of Southern California-Children's Hospital	Los Angeles	California	90227	Recruiting
Stanford University School of Medicine	Palo Alto	California	94304	Recruiting
University of California San Francisco Benioff Children's Hospitals	San Francisco	California	94158	Not yet recruiting
Lundquist Biomedical Research Institute at Harbor UCLA Medical Center	Torrance	California	90502	Recruiting
Children's Hospital Colorado	Aurora	Colorado	80045	Not yet recruiting
University of Colorado Anschutz School of Medicine	Aurora	Colorado	80045	Not yet recruiting
University of Miami Miller School of Medicine	Miami	Florida	33136	Recruiting
Emory University and Children's Healthcare of Atlanta	Atlanta	Georgia	30322	Recruiting
John Stroger Cook County Hospital	Chicago	Illinois	60680	Recruiting
University of Kansas Medical Center	Kansas City	Kansas	66160	Recruiting
Johns Hopkins Medical Institute	Baltimore	Maryland	21287	Recruiting
Kidney Disease Section, NIDDK, NIH	Bethesda	Maryland	20892	Completed
CS Mott Children's Hospital, University of Michigan	Ann Arbor	Michigan	48109	Recruiting
University of Michigan Medical Center	Ann Arbor	Michigan	48109	Recruiting
Mayo Clinic	Rochester	Minnesota	55905	Completed
Children's Mercy Hospital	Kansas City	Missouri	64108	Recruiting
Washington University - St Louis	St Louis	Missouri	63110	Not yet recruiting
Cohen Children's Hospital	New Hyde Park	New York	11040	Recruiting
New York University Medical Center	New York	New York	10010	Recruiting
Bellevue Hospital	New York	New York	10016	Recruiting
New York University Veterans Administration	New York	New York	10016	Recruiting
Columbia University Medical Center	New York	New York	10032	Recruiting
Montefiore Medical Center	The Bronx	New York	11040	Recruiting
University of North Carolina at Chapel Hill	Chapel Hill	North Carolina	27599	Recruiting
Atrium Health Levine Children's Hospital	Charlotte	North Carolina	28203	Recruiting
Wake Forest School of Medicine	Winston-Salem	North Carolina	27157	Withdrawn
University Hospital Rainbow Babies & Children's Hospital	Cleveland	Ohio	44106	Completed
MetroHealth Hospital at Case Western Medical Center	Cleveland	Ohio	44109	Completed
Cleveland Clinic	Cleveland	Ohio	44195	Recruiting
The Ohio State University Wexner Medical Center	Columbus	Ohio	43210	Recruiting
Children's Hospital of Philadelphia	Philadelphia	Pennsylvania	19104	Recruiting
University of Pennsylvania	Philadelphia	Pennsylvania	19104	Recruiting
Temple University	Philadelphia	Pennsylvania	19140	Recruiting
Medical University of South Carolina	Charleston	South Carolina	29425	Recruiting
University of Texas-Southwestern	Dallas	Texas	75390	Recruiting
Texas Children's Hospital - Baylor College of Medicine	Houston	Texas	77030	Recruiting
Seattle Children's Hospital	Seattle	Washington	98145	Recruiting
University of Washington	Seattle	Washington	98195	Recruiting
Providence Medical Research Center	Spokane	Washington	99204	Recruiting

Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.

Non-U.S. locations

This page focuses on the U.S. directory. The official record also lists 5 non-U.S. sites.

About this trial record page

What this page shows: Public field values for ClinicalTrials.gov record NCT01209000, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
What this page does not do: No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
Where the data comes from: Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
Last refresh: Last update posted Jun 9, 2026 · Synced Sep 6, 2026

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