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hereditary pheochromocytoma-paraganglioma - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

hereditary pheochromocytoma-paraganglioma

MONDO:0017366

Also known as:familial pheochromocytoma-paragangliomahereditary paraganglioma-pheochromocytoma syndromeSDHx-related paraganglioma-pheochromocytoma

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Overview

Neoplasm predisposition characterized by an increased risk of paragangliomas (tumors that arise from neuroendocrine tissues distributed along the paravertebral axis from the base of the skull to the pelvis) and pheochromocytomas (paragangliomas that are confined to the adrenal medulla).

OnsetADULT

Clinical Trials1 registered · 1 recruiting

Diagnosis

Biomarker and diagnostic research for hereditary pheochromocytoma-paraganglioma has been reported in the published literature.

Prognosis

Estimated prevalence: 1-9 in 1,000,000 (Rare).

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.

1 clinical trial registered, 1 recruiting. Interventions under study include other interventions. Research is primarily sponsored by academic and government institutions.

17 publications have been identified in PubMed for hereditary pheochromocytoma-paraganglioma. Research spans Case Report / Case Series (41%), Review / Meta-Analysis (35%), and Basic Science / Preclinical (12%).

Research Type	Count	% of Total
Patient case studies	7	41%

Data assembled from 4 of 12 sources · Last updated Sep 20, 2026, 5:36 PM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

External Resources

Orphanet

European rare disease database

Orphanet:29072

GARD

Genetic and Rare Diseases Info Center

GARD:11984

Questions for Your Care Team

→Are any of the 1 active clinical trial a good fit for my situation?
→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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hereditary pheochromocytoma-paraganglioma

Overview

Diagnosis

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

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