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primary focal segmental glomerulosclerosis - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

primary focal segmental glomerulosclerosis

MONDO:0100324

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Overview

A form of focal segmental glomerulosclerosis without identifiable etiology. Primary (idiopathic) FSGS has been associated with the presence of circulating permeability factors/cytokines, which cause foot process effacement and proteinuria.

TreatmentsNo approved treatments · 1 in pipeline

Clinical Trials8 registered · 6 recruiting

Diagnosis

Biomarker and diagnostic research for primary focal segmental glomerulosclerosis has been reported in the published literature.

Treatment

Compiled from FDA-approved drug records, orphan drug designations, and FDA Adverse Event Reporting System (FAERS) safety data. GeneReviews management guidance is included where available.

No approved treatments are currently available for primary focal segmental glomerulosclerosis. An additional 1 compound holds orphan drug designation.

Orphan Drug Designations

While no drugs are FDA-approved specifically for primary focal segmental glomerulosclerosis, some of the following designated compounds may be used off-label in clinical practice. Treatment decisions should be made in consultation with a specialist familiar with this condition.

The following drugs have received orphan drug designation from the FDA for primary focal segmental glomerulosclerosis. Orphan designation reflects regulatory interest and does not indicate approval for treatment.

Brand Name	Generic Name	Sponsor

Research Landscape

Sourced from ClinicalTrials.gov and PubMed. Publication types are classified using NLM-curated article metadata; research type breakdowns reflect the nature of published work for this disease.

8 clinical trials registered, 6 recruiting. Interventions under study include drug therapy, medical devices, and other interventions. Pipeline includes 2 PHASE3, 3 PHASE2, 2 NA. Research is sponsored by a mix of industry and academic institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT06315504](https://clinicaltrials.gov/study/NCT06315504)

Data assembled from 4 of 12 sources · Last updated Sep 19, 2026, 4:30 PM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

Questions for Your Care Team

→Are any of the 8 active clinical trials a good fit for my situation?
→What is the current development status of fresolimumab, and when might it become available?
→Are there specialists or centers of excellence for this condition in my area?
→Is there a patient registry I should consider joining?

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Research Type	Count	% of Total
Laboratory research	12	23%
Patient case studies	10	19%
Disease patterns and progression	10	19%
Clinical study results	9	17%
Research summaries	7	13%
Testing and diagnosis research	4	8%
New treatment approaches	1	2%

primary focal segmental glomerulosclerosis

Overview

Diagnosis

Treatment

Orphan Drug Designations

Research Landscape

Medical References

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Clinical Trials

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