[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"glomerulosclerosis-focal-segmental\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:glomerulosclerosis-focal-segmental":27},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,3,0,[8,53,87],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":18,"enrollmentInfo":19,"targetDuration":4,"studyType":22,"phases":4,"briefSummary":23,"conditions":24,"keywords":28,"overallStatus":40,"whyStopped":4,"lastUpdateSubmitDate":41,"lastUpdatePostDateStruct":42,"startDateStruct":45,"completionDateStruct":47,"leadSponsor":49,"locationsCount":52},"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":20,"type":21},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.",[25,26,27],"Minimal Change Disease (MCD)","Membranous Nephropathy","Glomerulosclerosis, Focal Segmental",[29,30,31,32,33,34,26,35,36,37,15,38,39],"Focal and Segmental Glomerulosclerosis","Focal & Segmental Glomerulosclerosis","Focal Segmental Glomerulosclerosis","FSGS","Minimal change disease","MCD","MN","Nephrotic Syndrome","Neph Syndrome","NephCure","Halpin","RECRUITING","2026-06-08",{"date":43,"type":44},"2026-06-10","ACTUAL",{"date":46,"type":44},"2010-04",{"date":48,"type":21},"2030-12-31",{"name":50,"class":51},"University of Michigan","OTHER",44,{"id":54,"slug":55,"hasResults":11,"nctId":56,"briefTitle":57,"officialTitle":58,"acronym":59,"eligibilityCriteria":60,"healthyVolunteers":11,"sex":17,"minAge":61,"maxAge":4,"enrollmentInfo":62,"targetDuration":4,"studyType":22,"phases":4,"briefSummary":64,"conditions":65,"keywords":75,"overallStatus":40,"whyStopped":4,"lastUpdateSubmitDate":78,"lastUpdatePostDateStruct":79,"startDateStruct":81,"completionDateStruct":83,"leadSponsor":85,"locationsCount":86},"100478094","interview-study-of-adult-and-child-patients-and-parents-of-children-with-swelling-due-to-nephrotic-syndrome-100478094","NCT05505500","Interview Study of Adult and Child Patients and Parents of Children With Swelling Due to Nephrotic Syndrome.","Preparing a Clinical Outcomes Assessment Set for Nephrotic Syndrome","Prepare-NS","Criteria for the Observer Reported Outcomes (ObsRO) cohort of the study:\n\nInclusion Criteria:\n\n1. Parents\u002Fguardians must be able to read and understand English;\n2. Parents\u002Fguardians must be caring for a child (ages 2-11.999) with a medically documented diagnosis of idiopathic (primary) Nephrotic Syndrome (NS) or primary or monogenic NS associated kidney disease. Populations with Primary NS Conditions: Focal segmental glomerulosclerosis (FSGS), Minimal Change Disease (MCD), Immunoglobulin M (IgM) Nephropathy, Membranous Nephropathy (MN), and childhood - onset nephrotic syndrome not biopsied;\n3. The child must have a current NS-associated edema\n4. The child must have native kidney function\n5. Parents\u002Fguardians must provide informed consent.\n\nExclusion Criteria:\n\n1\\. Index case with dialysis dependence throughout the 3-month pre-enrollment period\n\nCriteria for the Patient Reported Outcomes (PRO) cohort of the study:\n\nInclusion Criteria:\n\n1. ≥8 years of age\n2. Able to read and understand English\n3. Primary (idiopathic) kidney disease that causes NS or monogenic NS associated kidney disease.\n\n   i. Populations with Primary Nephrotic Syndrome (NS) Conditions include: FSGS, MCD, IgM nephropathy, MN, and childhood - onset nephrotic syndrome not biopsied\n4. Current NS-associated edema\n5. Kidney function with most recent estimated Glomerular Filtration Rate (eGFR) \\> 25 ml\u002Fmin\u002F1.73m2\n6. Informed Consent: For patients ≥8 to \\\u003C18 years of age: a parent or legal guardian provide informed consent and the patient must provide assent. Patients ≥18 years of age must provide informed consent.\n\nExclusion Criteria:\n\n1. Native kidney disease participant with dialysis dependence during the 3-month pre-enrollment period\n2. Co-existing significant chronic or severe acute health condition that has the potential to influence how the participant feels or functions as related to fluid overload in NS","2 Years",{"count":63,"type":21},150,"Researchers from the University of Michigan and Northwestern University are studying people's experiences with swelling caused by Nephrotic Syndrome. Interviews with patients (child and adult) and parents of young children will be conducted. The information collected from the interviews will be used to develop a survey to use when testing new medications for Nephrotic Syndrome.\n\nPlease consider participating in a 1-hour long interview with the Prepare-NS research study to discuss children and adults experiences with swelling.",[66,27,67,26,68,69,70,36,71,72,73,74,32],"Fluid Overload","Edema","Minimal Change Disease","Minimal Change Nephrotic Syndrome","IgM Nephropathy","Glomerular Disease","Nephrotic Syndrome, Minimal Change","Nephrotic Syndrome in Children","Nephrotic Syndrome With Edema (Diagnosis)",[36,76,77,66,67,32,68,26,70],"Child","Adult","2025-12-15",{"date":80,"type":44},"2025-12-22",{"date":82,"type":44},"2022-04-18",{"date":84,"type":21},"2026-04-30",{"name":50,"class":51},1,{"id":88,"slug":89,"hasResults":11,"nctId":90,"briefTitle":91,"officialTitle":91,"acronym":92,"eligibilityCriteria":93,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":94,"targetDuration":96,"studyType":22,"phases":4,"briefSummary":97,"conditions":98,"keywords":100,"overallStatus":40,"whyStopped":4,"lastUpdateSubmitDate":101,"lastUpdatePostDateStruct":102,"startDateStruct":104,"completionDateStruct":106,"leadSponsor":108,"locationsCount":110},"100358661","the-forme-registry-the-german-focal-segmental-glomerulosclerosis-and-minimal-change-disease-registry-100358661","NCT03949972","The FOrMe Registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry)","FOrMe","Inclusion Criteria (cohort A):\n\n* written informed consent\n* 17 or less years of age\n* idiopathic nephrotic syndrome\n\nInclusion Criteria (cohort B):\n\n* written informed consent\n* older or equal to 18 years of age\n* biopsy-proven primary or secondary FSGS or MCD or biopsy-proven recurrence of disease in kidney transplant.\n\nExclusion Criteria (both cohorts):\n\n* Prior kidney transplant without biopsy-proven recurrence\n* A clinical diagnosis of other glomerular disease resulting in secondary MCD or FSGS as judged by the treating physicians.\n* Refusal to provide written informed consent\n* (Anticipated) incompliance with visit schedule",{"count":95,"type":21},500,"15 Years","In a monocentric, later multicentric prospective approach the FOrMe registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry) aims to generate a longitudinal cohort of 150 pediatric cases of idiopathic nephrotic syndrome and 350 adult cases of biopsy-proven Minimal Change Disease (MCD) or Focal and Segmental Glomerular Sclerosis (FSGS) over 10 years. The registry will provide a repository for biomaterials such as blood samples, DNA, urine, feces, and tissue biopsies that will be accessible to collaborators to facilitate future research on pathogenesis, diagnostics, and treatment.",[27,68,99],"Idiopathic Nephrotic Syndrome",[29,30,32,33,34,36],"2025-09-11",{"date":103,"type":44},"2025-09-17",{"date":105,"type":44},"2018-04-01",{"date":107,"type":21},"2033-03-31",{"name":109,"class":51},"Prof. Dr. Paul Brinkkoetter",12]