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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

Find Clinical TrialsTrials

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 Trials11 registered · 8 recruiting

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.

11 clinical trials registered, 8 recruiting. Interventions under study include other interventions, drug therapy, procedural interventions, and medical devices. Pipeline includes 2 PHASE2, 1 PHASE1, 2 NA. Research is primarily sponsored by academic and government institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT06495983](https://clinicaltrials.gov/study/NCT06495983)

Data assembled from 3 of 12 sources · Last updated Nov 4, 2026, 2:26 AM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Patient Support

Patient Advocacy Groups

View all PAGs →

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 11 active clinical trials 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?

← Back to All Diseases

Research Type	Count	% of Total
Patient case studies	88	55%
Research summaries	29	18%
Testing and diagnosis research	15	9%
Disease patterns and progression	10	6%
Clinical study results	7	4%
Laboratory research	5	3%
Other research	3	2%
New treatment approaches	2	1%

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

Marked hypokalemia at presentation in an adolescent with ectopic ACTH syndrome secondary to a bronchial carcinoid tumor: a case report.

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.

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

Marked hypokalemia at presentation in an adolescent with ectopic ACTH syndrome secondary to a bronchial carcinoid tumor: a case report.

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.