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Nelson, MD",{"facility":609,"status":47,"city":610,"state":583,"zip":611,"country":51,"countryCode":52,"cosmosGeoPoint":612,"geoPoint":616,"contacts":617},"Providence Medical Research Center","Spokane","99204",{"type":54,"coordinates":613},[614,615],-117.42908,47.65966,{"lat":615,"lon":614},[618,622,626],{"name":619,"role":38,"phone":620,"phoneExt":10,"email":621},"Ann Cooper, CCRC","509-474-4327","Ann.Cooper@providence.org",{"name":623,"role":38,"phone":624,"phoneExt":10,"email":625},"Kelli Kuykendall, CCRC","509-474-4320","Kelli.Kuykendall@providence.org",{"name":627,"role":130,"phone":10,"phoneExt":10,"email":10},"Katherine Tuttle, MD",{"facility":629,"status":230,"city":630,"state":631,"zip":632,"country":633,"countryCode":634,"cosmosGeoPoint":635,"geoPoint":639,"contacts":10},"York Central Hospital","Richmond Hill","Ontario","L4C 4Z3","Canada","CA",{"type":54,"coordinates":636},[637,638],-79.43725,43.87111,{"lat":638,"lon":637},{"facility":641,"status":230,"city":642,"state":631,"zip":643,"country":633,"countryCode":634,"cosmosGeoPoint":644,"geoPoint":648,"contacts":10},"Scarborough Hospital","Scarborough Village","M1H 3G4",{"type":54,"coordinates":645},[646,647],-79.22124,43.73899,{"lat":647,"lon":646},{"facility":650,"status":47,"city":651,"state":631,"zip":652,"country":633,"countryCode":634,"cosmosGeoPoint":653,"geoPoint":657,"contacts":658},"Credit Valley Hospital","Toronto","L5M 2N1",{"type":54,"coordinates":654},[655,656],-79.39864,43.70643,{"lat":656,"lon":655},[659,663],{"name":660,"role":38,"phone":661,"phoneExt":10,"email":662},"Martin Romano, MD","416-340-3514","martin.romano@thp.ca",{"name":664,"role":130,"phone":10,"phoneExt":10,"email":10},"Phillip Boll, MD",{"facility":666,"status":47,"city":651,"state":631,"zip":667,"country":633,"countryCode":634,"cosmosGeoPoint":668,"geoPoint":670,"contacts":671},"Sunnybrook Hospital","M4N 3M5",{"type":54,"coordinates":669},[655,656],{"lat":656,"lon":655},[672,675],{"name":673,"role":38,"phone":10,"phoneExt":10,"email":674},"Rhea O'Neill","rhea.oneill@sri.utoronto.ca",{"name":676,"role":34,"phone":10,"phoneExt":10,"email":10},"Michelle Hladunewich, MD",{"facility":678,"status":47,"city":651,"state":631,"zip":679,"country":633,"countryCode":634,"cosmosGeoPoint":680,"geoPoint":682,"contacts":683},"University Health Network","M5G2C4",{"type":54,"coordinates":681},[655,656],{"lat":656,"lon":655},[684,687,689,691,693],{"name":685,"role":38,"phone":661,"phoneExt":10,"email":686},"Paul Ling, MD","pling@uhnresearch.ca",{"name":660,"role":38,"phone":10,"phoneExt":10,"email":688},"Martin.Romano@trilliumhealthpartners.ca",{"name":690,"role":34,"phone":10,"phoneExt":10,"email":10},"Daniel Cattran, MD",{"name":692,"role":130,"phone":10,"phoneExt":10,"email":10},"Heather Reich, MD",{"name":676,"role":130,"phone":10,"phoneExt":10,"email":10},{"type":34,"investigatorFullName":695,"investigatorTitle":696,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"Matthias Kretzler","Professor",[698,701],{"name":699,"class":700},"National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)","NIH",{"name":702,"class":6},"The NephCure Foundation","100148840","nephrotic-syndrome-study-network-100148840",false,"NCT01209000","Nephrotic Syndrome Study Network","Nephrotic Syndrome Study Network Under the Rare Diseases Clinical Research Network","NEPTUNE","Cohort A (biopsy cohort) Inclusion Criteria:\n\nPatients presenting with an incipient clinical diagnosis for FSGS\u002FMCD or MN or pediatric participants not previously biopsied, with a clinical diagnosis for FSGS\u002FMCD or MN meeting the following inclusion criteria:\n\n* Documented urinary protein excretion ≥1500 mg\u002F24 hours or spot protein: creatinine ratio equivalent at the time of diagnosis or within 3 months of the screening\u002Feligibility visit.\n* Scheduled renal biopsy\n\nCohort B (non-biopsy, cNEPTUNE) Inclusion Criteria:\n\n* Age \\\u003C19 years of age\n* Initial presentation with \\\u003C30 days immunosuppression therapy\n* Proteinuria\u002Fnephrotic\n\n  * UA\\>2+ and edema OR\n  * UA\\>2+ and serum albumin \\\u003C3 OR\n  * UPC \\> 2g\u002Fg and serum albumin \\\u003C3\n\nExclusion Criteria (Cohort A\\&B):\n\n* Prior solid organ transplant\n* A clinical diagnosis of glomerulopathy without diagnostic renal biopsy\n* Clinical, serological or histological evidence of systemic lupus erythematosus (SLE) as defined by the ARA criteria. Patients with membranous in combination with SLE will be excluded because this entity is well defined within the International Society of Nephrology\u002FRenal Pathology Society categories of lupus nephritis, and frequently overlaps with other classification categories of SLE nephritis (68)\n* Clinical or histological evidence of other renal diseases (Alport, Nail Patella, Diabetic Nephropathy, IgA-nephritis, monoclonal gammopathy (multiple myelomas), genito-urinary malformations with vesico-urethral reflux or renal dysplasia)\n* Known systemic disease diagnosis at time of enrollment with a life expectancy less than 6 months\n* Unwillingness or inability to give a comprehensive informed consent\n* Unwillingness to comply with study procedures and visit schedule\n* Institutionalized individuals (e.g., prisoners)","ALL","80 Years",{"count":714,"type":715},1200,"ESTIMATED","OBSERVATIONAL","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\u002FFSGS 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.\n\nIn 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.\n\nThrough 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.",[719,720,721],"Minimal Change Disease (MCD)","Membranous Nephropathy","Glomerulosclerosis, Focal Segmental",[723,724,725,726,727,728,720,729,730,731,709,732,733],"Focal and Segmental Glomerulosclerosis","Focal & Segmental Glomerulosclerosis","Focal Segmental Glomerulosclerosis","FSGS","Minimal change disease","MCD","MN","Nephrotic Syndrome","Neph Syndrome","NephCure","Halpin","2026-06-08",{"date":736,"type":737},"2026-06-10","ACTUAL",{"date":739,"type":737},"2010-04",{"date":741,"type":715},"2030-12-31",{"name":5,"class":6},44]