An observational study in Cushing's Disease, Cushing Syndrome and Cushing Disease, sponsored by Memorial Sloan Kettering Cancer Center. Recruiting at 7 sites in United States. Open to participants aged 14 Years and older. Per ClinicalTrials.gov, last updated 2025-10-23.
Sponsored by Memorial Sloan Kettering Cancer Center · Observational
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.
Potential research subjects will be identified by a member of the patient's treatment team, the protocol investigator, or research team at Memorial Sloan-Kettering Cancer Center (MSKCC). If the investigator is a member of the treatment team, s/he will screen their patient's medical records for suitable research study participants and discuss the study and their potential for enrolling in the research study. Potential subjects contacted by their treating physician will be referred to the investigator/research staff of the study.
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.
Exclusion Criteria:
Other: Cushing's QoL (Quality of Life Questionnaire) · Other: Nottingham Health Profile (NHP) · Other: Hospital Anxiety and Depression Scale (HADS) · Other: Perceived Stress Scale (PSS) · Other: Barratt's Impulsivity Scale (BIS) · Other: Beck Depression Inventory (BDI) · Other: State-Trait Anxiety Inventory (STAI) · Other: State Food Craving Questionnaire-State (FCQ-S) · Other: Trait Food Craving Questionnaire-Trait (FCQ-T) · Other: Visual Analogue Scale (VAS) · Other: Sensitivity to Reinforcement of Addictive and other Primary Rewards (STRAP-R) food variant
Cushing's QoL is a validated disease specific questionnaire consisting of 12 questions on a five-point Likert scale ranging from always to never. The total score ranges from 12 to 60, with a lower score indicating a greater negative impact on health related QoL. This is converted to a 0-100 scale, 0 indicating the worst and 100 indicating the best QoL
NHP is used in patients to assess general health and quality of life. This assessment consists of 38 yes/no questions that are subdivided into six scales assessing impairments: pain (eight items), energy level (three items), sleep (five items), emotional reactions (nine items), social isolation (five items) and physical mobility (eight items). A higher score indicates more impairment
HADS consists of 14 items pertaining to anxiety and depression, with each item measured on a four-point scale. Total scores for the anxiety and depression subscales range from 0 to 21. A higher score indicates greater symptomatology
The PSS predicts both objective biological markers of stress and increased risk of disease in patients with higher stress levels.
BDI and BIS in combination have demonstrated that depression and/or binge eating may be mediating factors for the outcome of obesity
BDI and BIS in combination have demonstrated that depression and/or binge eating may be mediating factors for the outcome of obesity
The STAI provides data to help distinguish between anxiety and depression.
The FCQ-S consists of 15 items assessing: desire to eat, anticipation of positive reinforcement from eating, anticipation of negative reinforcement (reduction of negative affect) from eating, lack of control over eating, and (physiological) hunger; higher scores reflect stronger food craving. Participants respond, using a Likert-type scale, how much each item is true of them right now.
Trait food craving will be assessed with the Food Craving Questionnaire-Trait (FCQ-T). The FCQ-T consists of 39 items assessing: intentions/plans to eat, anticipation of positive reinforcement from eating, anticipation of negative reinforcement from eating, lack of control over eating, preoccupation with food, (physiological) hunger, emotions preceding or following food cravings or eating, environmental cues that may elicit food cravings, negative emotions including guilt experienced as a consequence of food cravings, and/or indulging such cravings; higher scores again indicate higher trait craving. Individuals are asked to respond, using a Likert-type scale, how much each item is true of them in general.
A validated visual analogue scale (VAS) questionnaire will be completed in the fasting state. The VAS consists of 100-mm lines with words anchored at each end describing extreme sensations of hunger, prospective consumption ("How much do you think you can eat?"), fullness, and satisfaction, as well as craving (sweet, salty, fatty or savory). Patients will be asked to make a vertical mark across the line corresponding to their feelings. Quantification will performed by measuring the distance from the left end of the line to the mark.
A validated questionnaire that assesses perceived subjective value attributed to expected/hypothetical foods and other primary reinforcers will be administered. This variant of this questionnaire was initially developed by Dr. Goldstein to assess 'liking' and 'wanting' of expected drug rewards for patients with cocaine addiction. The current assessment uses a modified version to assess 'liking' and 'wanting' for food.
Collection of data on Cushing's Syndrome participants before and over time after surgical, medication, and/or radiation therapy.
Time frame: up to 10 years after treatment
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
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