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Following People With Cushing's Syndrome to Track Long-Term Outcomes

Records routine care and questionnaires in people with Cushing's syndrome over time.

Key facts

Who runs it
Memorial Sloan Kettering Cancer Center
Where
Basking Ridge, Commack, Harrison, Middletown, Montvale, New York, and Uniondale, United StatesSee the 7 sites
Trial code
Registry title
Collecting Information About Treatment Results for Patients With Cushing's Syndrome
Status
Recruiting
People taking part
300 people, planned
Started
28 Nov 2017
Expected to end
28 Nov 2026
Type of study
Observational
Treatments 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)
  • State-Trait Anxiety Inventory (STAI)
  • State Food Craving Questionnaire-State (FCQ-S)
  • Trait Food Craving Questionnaire-Trait (FCQ-T)
  • Visual Analogue Scale (VAS)
  • Sensitivity to Reinforcement of Addictive and other Primary Rewards (STRAP-R) food variant
Record updated
26 October 2026

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for people aged 14 or older with Cushing's syndrome, either active or treated, to follow their routine care and outcomes over time.

Age
14 years or older
Sex
All sexes can join.
Disease stage
Active or treated overt Cushing's (from a pituitary, ectopic, or adrenal tumor), mild adrenal Cushing's syndrome (MACS), or a silent corticotroph tumor. The study doctor confirms the diagnosis.
Biomarker or test result
Diagnosis is based on test results such as 24-hour urinary free cortisol, ACTH levels, midnight salivary cortisol, or dexamethasone suppression testing. Pituitary Cushing's also needs a pituitary lesion on MRI. A silent corticotroph tumor needs surgical pathology that is positive for ACTH.

Main reasons for not taking part

  • Cushing's syndrome caused by medicines (iatrogenic Cushing's)

The registry criteria, word for word

Show all 6 criteriaShow less

Who can take part

  • 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

Who cannot take part

  • Patients with a diagnosis of iatrogenic Cushing's

Where in United States

  • Memorial Sloan Kettering Basking Ridge (Limited Protocol Activities)Basking Ridge, United StatesContact: Eliza Geer, MDTaking people
  • Memorial Sloan Kettering Cancer Center @ Suffolk-Commack (Limited protocol activity)Commack, United StatesContact: Eliza Geer, MDTaking people
  • Memorial Sloan Kettering Westchester (Limited Protocol Activities)Harrison, United StatesContact: Eliza Geer, MDTaking people
  • Memorial Sloan Kettering Monmouth (Limited Protocol Activities)Middletown, United StatesContact: Eliza Geer, MDTaking people
  • Memorial Sloan Kettering Bergen (Limited Protocol Activities)Montvale, United StatesContact: Eliza Geer, MDTaking people
  • Memorial Sloan-Kettering Cancer CenterNew York, United StatesContact: Eliza Geer, MDTaking people
  • Memorial Sloan Kettering Nassau (Limited Protocol Activities)Uniondale, United StatesContact: Eliza Geer, MDTaking people

About the trial

What the trial wants to find out

The purpose of this study is to follow participants with Cushing's syndrome during the course of their routine care and to form a data registry to study long term participant outcomes.

The group in the trial

  • Participants with Cushing's Syndrome

    Treatment: 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), State-Trait Anxiety Inventory (STAI), State Food Craving Questionnaire-State (FCQ-S), Trait Food Craving Questionnaire-Trait (FCQ-T), Visual Analogue Scale (VAS), and Sensitivity to Reinforcement of Addictive and other Primary Rewards (STRAP-R) food variant

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
Treatment Outcomes for Patients With Cushing's Syndrome: a Prospective Data Collection Study
Plain-language title
Following People With Cushing's Syndrome to Track Long-Term OutcomesGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
26 October 2026