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ectopic ACTH secretion syndrome - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

ectopic ACTH secretion syndrome

MONDO:0043472

Also known as:ectopic ACTH secretionectopic ACTH syndromehypercortisolism due to nonpituitary tumor

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Overview

A syndrome characterized by abnormal secretion of adrenocorticotrophic hormone in conjunction with neoplastic growth occurring anywhere in the body. The most common associations are tumors of the bronchus (oat cell or carcinoid), thymic tumors (epithelial or carcinoid), and pancreatic endocrine tumor. (DeVita et al. Cancer, p 1364. 4th edition. Lippincott)

Clinical Trials1 registered

Patient Orgs2 organizations · Cushing’s Support & Research Foundation (CSRF), NVACP (Dutch Federation of Addison and Cushing Patients and CAH and Conn)

Diagnosis

Biomarker and diagnostic research for ectopic ACTH secretion syndrome has been reported in the published literature.

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. Interventions under study include drug therapy. Pipeline includes 1 PHASE1. Research is primarily industry-sponsored.

159 publications have been identified in PubMed for ectopic ACTH secretion syndrome. Research spans Case Report / Case Series (55%), Review / Meta-Analysis (18%), and Diagnostic / Biomarker (9%).

Research Type	Count	% of Total
Patient case studies	88	55%

Data assembled from 3 of 12 sources · Last updated Sep 19, 2026, 2:16 AM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Patient Support

Patient Advocacy Groups

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Cushing’s Support & Research Foundation (CSRF)Primary Focus

USWebsite ↗

NVACP (Dutch Federation of Addison and Cushing Patients and CAH and Conn)

USWebsite ↗

Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.

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Medical References

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?
→How can I connect with Cushing’s Support & Research Foundation (CSRF) and other patient organizations for support?

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Kisho

ectopic ACTH secretion syndrome

Overview

Diagnosis

Research Landscape

Patient Support

Patient Advocacy Groups

Medical References

Questions for Your Care Team

Questions for Your Care Team

Recent Publications

Latest News & Developments

Ectopic ACTH-dependent Cushing syndrome in 3 hospitalized patients: lessons learned from management with osilodrostat.

Severe Ectopic ACTH-Dependent Cushing Syndrome Due to a Neuroendocrine Tumor of Occult Primary Origin Presenting with Widespread Metastases and Early Vertebral Fractures: A Rare Case Report.

Use of PRRT and osilodrostat for ectopic Cushing syndrome secondary to thymic neuroendocrine neoplasm.

ectopic ACTH secretion syndrome

Overview

Diagnosis

Research Landscape

Patient Support

Patient Advocacy Groups

Medical References

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Recent Publications

Latest News & Developments

Ectopic ACTH-dependent Cushing syndrome in 3 hospitalized patients: lessons learned from management with osilodrostat.

Severe Ectopic ACTH-Dependent Cushing Syndrome Due to a Neuroendocrine Tumor of Occult Primary Origin Presenting with Widespread Metastases and Early Vertebral Fractures: A Rare Case Report.

Use of PRRT and osilodrostat for ectopic Cushing syndrome secondary to thymic neuroendocrine neoplasm.