Collecting information on treatment results for patients with Cushing's syndrome
Official title: Treatment Outcomes for Patients With Cushing's Syndrome: a Prospective Data Collection Study
Run by Memorial Sloan Kettering Cancer Center · NCT03364803 · Data updated 2026-11-12
This study is collecting information from people with Cushing's syndrome during their regular treatment to see how the condition affects their quality of life and mental health over time.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 14 Years and up |
| Sex | All |
| Enrollment | 300 (estimated) |
| Sponsor | Memorial Sloan Kettering Cancer Center Academic / other |
| Locations | 7 sites (Basking Ridge, New Jersey and 6 other locations) |
| Status | Recruiting |
| Started | November 28, 2017 |
| Main results expected | November 28, 2026 |
| Study ends | November 28, 2026 |
| Registry record updated | October 26, 2026 |
| Trial ID | NCT03364803 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals aged 14 or older with active or treated overt Cushing's syndrome or mild adrenal Cushing's syndrome.
✕Probably not a fit
Patients without a confirmed diagnosis of Cushing's syndrome or those under the age of 14 may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to follow participants diagnosed with Cushing's syndrome throughout their routine care, creating a comprehensive data registry to analyze long-term outcomes. Participants will be assessed using various quality of life and psychological questionnaires, including the Cushing's QoL, Nottingham Health Profile, and Hospital Anxiety and Depression Scale. The study seeks to gather valuable information that can enhance understanding of the condition and improve patient care.
Why it matters
Potential benefit: If successful, this study could provide insights that lead to improved management and treatment strategies for patients with Cushing's syndrome.
How similar studies have gone: Other studies focusing on patient registries for chronic conditions have shown success in improving treatment outcomes and understanding disease progression.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Age 14 or older * Active or treated overt Cushing's (due to pituitary, ectopic, or adrenal tumor), mild adrenal Cushing's syndrome (MACS), or a silent corticotroph tumor * The diagnosis of CS or MACS will be made by the PI, based on the below Endocrine Society guidelines, the patient's clinical presentation, and the PI's judgment. * Diagnostic criteria for ACTH-dependent Cushing's are according to the Endocrine Society and European Society of Endocrinology guidelines and include: Elevated 24-hour urinary free cortisol (UFC), normal or elevated plasma ACTH, elevated midnight salivary cortisol levels, or classic dexamethasone suppression testing for CD (morning cortisol \> 5 ug/dL after 1 mg overnight of classic 2-day low dose test) and a pituitary lesion on MRI (in the case of pituitary Cushing's). If patient does not have any of these results, pathology of ACTH tumor may confirm presence of disease. * Diagnostic criterion for MACS is according to the European Society of Endocrinology guidelines: Classic dexamethasone suppression testing for CS (morning cortisol \>1.8 µg/dL after 1 mg overnight) and the presence of an adrenal adenoma. * Silent corticotroph tumors will be defined by surgical pathology demonstrating positivity for ACTH, in the absence of clinical and biochemical features of Cushing's syndrome. * In lieu of MRI, surgical, or laboratory reports, physician's assessment note including mention of results will also be used as source for eligibility purposes. Exclusion Criteria: * Patients with a diagnosis of iatrogenic Cushing's.
Where it's running
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Memorial Sloan Kettering Basking Ridge (Limited Protocol Activities)
Basking Ridge, New Jersey, United States Recruiting -
Memorial Sloan Kettering Monmouth (Limited Protocol Activities)
Middletown, New Jersey, United States Recruiting -
Memorial Sloan Kettering Bergen (Limited Protocol Activities)
Montvale, New Jersey, United States Recruiting -
Memorial Sloan Kettering Cancer Center @ Suffolk-Commack (Limited protocol activity)
Commack, New York, United States Recruiting -
Memorial Sloan Kettering Westchester (Limited Protocol Activities)
Harrison, New York, United States Recruiting -
Memorial Sloan Kettering Cancer Center
New York, New York, United States Recruiting
Show 1 more location
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Memorial Sloan Kettering Nassau (Limited Protocol Activities)
Uniondale, New York, United States Recruiting
Study contacts
- Study coordinator: Eliza Geer, MD
- Email: geere@mskcc.org
- Phone: 646-888-2627
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Circadian Gene Changes in People with Glucocorticoid Disorders
This study tests whether circadian gene expression in blood cells differs between people with glucocorticoid disorders and healthy controls.
-
Adrenal Diseases in Modena: A Patient Registry at Modena University Hospital
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-
Myokines in metabolic and endocrine diseases linked to sarcopenia
This study tests whether myokines can serve as biomarkers or drivers of sarcopenia and sarcopenic obesity in people with metabolic or endocrine diseases.
-
Using [18F]FET PET to find ACTH-secreting pituitary microadenomas
This project tests whether [18F]FET PET scans can better locate ACTH-secreting pituitary microadenomas in adults with Cushing's disease.
-
Fluid-based PET imaging to locate ACTH-secreting pituitary adenomas in Cushing disease
This study tests whether FET PET/CT scanning can accurately locate ACTH-secreting pituitary adenomas in adults with Cushing disease who are planning pituitary surgery.
-
Intraoperative contrast-enhanced ultrasound to locate pituitary adenomas in Cushing's disease
This pilot tests whether using contrast-enhanced ultrasound during transsphenoidal surgery helps surgeons find and remove pituitary adenomas in people with Cushing's disease.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.