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Observational Study for Cushing's Syndrome Treatment Outcomes

This study is collecting information about how people with Cushing's Syndrome or Cushing's Disease respond to their regular treatments over time. It's an observational study, meaning researchers will gather data from your routine care rather than testing a new drug. They will use questionnaires like the Cushing's QoL (Quality of Life Questionnaire), Nottingham Health Profile, Hospital Anxiety and Depression Scale (HADS), Perceived Stress Scale (PSS), and Barratt's Impulsivity Scale (BIS) to understand your health and well-being. You may be able to join if you are 14 or older and have active or treated Cushing's Syndrome. The goal is to create a long-term registry to better understand how different treatments affect patients.

Study design
This is an observational study aiming to enroll 300 participants. It is not testing a specific intervention but rather collecting data on routine care.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for up to 10 years after their treatment.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03364803

Collecting Information About Treatment Results for Patients With Cushing's Syndrome

Recruiting
Not specifiedAges 14+Observational
Memorial Sloan Kettering Cancer Center
~300 participants
Updated 2025-10-23 on ClinicalTrials.gov
What's tested:Cushing's QoL (Quality of Life Questionnaire)Nottingham Health Profile (NHP)Hospital Anxiety and Depression Scale (HADS)Perceived Stress Scale (PSS)Barratt's Impulsivity Scale (BIS)Beck Depression Inventory (BDI)

At a glance

Recruiting sites
7 of 7 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Collection of data on Cushing's Syndrome participants before and over time after surgical, medication, and/or radiation therapy.
Measured over up to 10 years after treatment

Conditions

Cushing's Disease
Cushing Syndrome
Cushing Disease

Explore related trials

Adrenal Cushing's syndromeCushing DiseaseCushing SyndromeSilent Corticotroph Tumor

Where it's being run

7 sites across 2 states
New York4
New Jersey3

Who to contact

Eliza Geer, MD
[email protected]
646-888-2627
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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

Patients with a diagnosis of iatrogenic Cushing's.

What this trial measures

  • Collection of data on Cushing's Syndrome participants before and over time after surgical, medication, and/or radiation therapy.up to 10 years after treatment