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pseudotumor cerebri (IIH) - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

pseudotumor cerebri

MONDO:0009468

Also known as:IIHIdiopathic Intracranial Hypertensionbenign intracran. hypt.

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Overview

Idiopathic intracranial hypertension is a neurological disorder characterized by isolated increased intracranial pressure manifesting with recurrent and persistent headaches, nausea, vomiting, progressive and transient obstruction of the visual field, papilledema. Visual loss can be irreversible.

GeneticsAutosomal recessive

TreatmentsNo approved treatments · 2 in pipeline

Clinical Trials27 registered · 4 recruiting

Clinical Presentation

Features include: Papilledema, Hypertension, and Increased intracranial pressure.

Organ System	Phenotype Count	Example Features
Heart and blood vessels	1	Hypertension

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Diagnosis

Biomarker and diagnostic research for pseudotumor cerebri 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 pseudotumor cerebri. An additional 2 compounds hold orphan drug designation.

Orphan Drug Designations

While no drugs are FDA-approved specifically for pseudotumor cerebri, 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 pseudotumor cerebri. Orphan designation reflects regulatory interest and does not indicate approval for treatment.

Brand Name	Generic Name	Sponsor

Prognosis

Estimated prevalence: 1-5 in 10,000 (Uncommon).

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.

27 clinical trials registered, 4 recruiting. Interventions under study include other interventions, medical devices, drug therapy, and procedural interventions. Pipeline includes 1 PHASE4, 2 PHASE3, 12 NA. Research is sponsored by a mix of industry and academic institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT03304314](https://clinicaltrials.gov/study/NCT03304314)

Data assembled from 7 of 12 sources · Last updated Sep 19, 2026, 8:50 AM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

External Resources

OMIM

Online Mendelian Inheritance in Man

OMIM:243200

Orphanet

European rare disease database

Orphanet:238624

GARD

Genetic and Rare Diseases Info Center

GARD:4561

Questions for Your Care Team

→Should my partner and I meet with a genetic counselor to discuss carrier status and family planning?
→Are any of the 27 active clinical trials a good fit for my situation?
→What is the current development status of Octreotide Acetate, 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
Research summaries	38	37%
Disease patterns and progression	25	24%
Patient case studies	15	15%
Clinical study results	12	12%
Testing and diagnosis research	9	9%
Laboratory research	4	4%

Kisho

pseudotumor cerebri

Overview

Clinical Presentation

Explore clinical features

Diagnosis

Treatment

Orphan Drug Designations

Prognosis

Research Landscape

Medical References

External Resources

OMIM

Orphanet

GARD

Questions for Your Care Team

Questions for Your Care Team

Clinical Trials

Recent Publications

Latest News & Developments

Reactive nodular fibrous pseudotumor of the omentum: a rare case report and literature review.

pseudotumor cerebri

Overview

Clinical Presentation

Explore clinical features

Diagnosis

Treatment

Orphan Drug Designations

Prognosis

Research Landscape

Medical References

External Resources

OMIM

Orphanet

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Clinical Trials

Recent Publications

Latest News & Developments

Reactive nodular fibrous pseudotumor of the omentum: a rare case report and literature review.