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RecruitingNCT04543253Updated Sep 18, 2026

Recovery From Cushing Syndrome and Mild Autonomous Cortisol Secretion (MACS)

An observational study in Cushing Syndrome, sponsored by Mayo Clinic. Recruiting at 1 site in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-09-18.

Sponsored by Mayo Clinic · Observational

Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
700
Ages
18 Years and older
Sex
All
01

Study summary

Cushing syndrome (CS) is an endocrine disorder caused by chronic exposure to glucocorticoid (GC) excess. Endogenous CS has an estimated incidence of 0.2 to 5.0 cases per million per year and prevalence of 39 to 79 cases per million in various populations. CS usually affects young women, with a median age at diagnosis of 41.4 with a female-to-male ratio of 3:1. Following a curative surgery for CS, patients develop adrenal insufficiency and require GC replacement postoperatively until the hypothalamic-pituitary-adrenal (HPA) axis recovery occurs. Factors, such as age, gender, BMI, subtypes of CS, duration of symptoms, clinical and biochemical severity and postoperative GC dose have been reported to affect the HPA recovery in small retrospective studies. Glucocorticoid withdrawal syndrome (GWS) is a withdrawal reaction due to decrease in supraphysiological GC concentrations, which occurs after a successful surgery of CS. Glucocorticoid withdrawal syndrome (GWS) is under-recognized entity in patients undergoing curative surgery for endogenous Cushing syndrome.

In this study we aim to determine pre- and post-surgical predictors of the duration and severity of glucocorticoid withdrawal in patients undergoing a curative surgery for cortisol excess and assess the effect of MUSE intervention on GWS severity in patients undergoing curative surgery for CS as compared to standard of care.

Read the detailed description

Specific Aim 1: To determine pre- and post-surgical predictors of the duration and severity of glucocorticoid withdrawal in patients undergoing a curative surgery for cortisol excess Specific Aim 2: To characterize the timing and recovery of hypercortisolism-induced signs and symptoms, proximal myopathy and tissue accumulation of Advanced Glycation End products (AGEs) in patients after a curative surgery Specific Aim 3: To assess the effect of MUSE intervention on GWS severity in patients undergoing curative surgery for CS as compared to standard of care

  1. Selection of study subjects and medical records review. We will prospectively recruit adult patients with CS of any three subtypes (pituitary, adrenal or ectopic CS) and MACS undergoing a curative surgery, from the pituitary clinic. Investigator will discuss participation in the study and obtain an informed consent. We will review data for any potential risk factors through clinical interview and review of medical record. Data will include demographics, behavioral factors (smoking and alcohol consumption), past medical history (history of AI, psychiatric disorder and recent GC usage), GWS related symptoms and signs (anorexia, nausea, emesis, lethargy, somnolence, arthralgia, myalgia, fever, hypotension), and lab tests.
  2. Subjects: We will enroll 100 consecutive subjects in this study who will participate in this study for up to 2 years. Inclusion and exclusion criteria are as below. We plan to have 50 subjects participate in the intervention arm with MUSE in one year, without modifying other study procedures.
  3. Step-by-Step methods:

    • Patients will be identified by their clinician. Permission will be obtained from the patient in order for one of the investigators to explain the study and obtain informed written consent.
    • Baseline history, physical examination, and the necessary baseline tests will be performed based on standard of care and as considered necessary by the treating physician.
    • Medical record will be reviewed for demographic information, comorbidities, medical therapy, imaging information and biochemical testing results
    • We will use a scoring system to quantify biochemical severity, and to classify clinical abnormalities as mild, moderate and severe ( based on existent laboratory and clinical parameters).
    • At baseline, all patients will be asked to complete the Cushing QoL questionnaire, SF36 and AddiQol questionnaires (forms are attached in Document). Patients will discuss the intervention with MUSE with the study investigator. If they agree to participate in the intervention arm, they will be instructed on its use.
    • At follow up, patients will complete AddQoL survey (weekly in the first 3 months, every 4 weeks in the next 6 months, every 3 months in the next 12 months, and then every 6 months until the end of the study) and SF36 survey (every 3 months) until the end of the study. (In-person, through a paper survey or electronically using external REDCap server (user name and password protected)).
    • For patients in the intervention group, in addition to the above, at the time of enrollment, the study coordinator will help set up the MUSE application on to iPad or iPhone or Android phone (we will use generic login name and password without protected health information included). The coordinator will also go over a few helpful hints and discuss the homework log, which will need to be completed throughout the course of the study. After the surgery, patients are asked to complete the 3 minute 'focusing' exercise daily until 12 weeks after the surgery. During this time frame we will download the data from our end on a weekly basis. After 12 weeks, the frequency of the usage will be at the participant's discretion although ongoing usage is encouraged and data download should continue. In addition, we ask that patients bring iPad, iPhone or Android phone to each of the clinical visit for an app interrogation.
    • Patient will participate in the study until one of the following: 1) 2 years of follow up completed, 2) patient withdraws consent, 3) HPA axis recovery is achieved and patient weans off GC, 4) completion of the study by the principal investigator.
02

Conditions studied

  • Cushing Syndrome

Keywords

  • Hypercortisolism
  • Cushing syndrome
  • Cushing disease
  • Pituitary
03

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

Any male or female at least 18 years of age undergoing curative surgery for Cushing's Syndrome and MACS.

Inclusion criteria

  1. age 18 and above,
  2. new diagnosis of CS of any of the three subtypes (pituitary, adrenal or ectopic CS), and MACS,
  3. planning for a curative surgery
  4. ability to provide informed consent.

Exclusion criteria

Exclusion Criteria:

  1. systemic supraphysiological GC for any reason within 1 month of enrollment, for more than 2 weeks,
  2. inability to provide informed consent
04

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
700 participants (estimated)
Patient registry
No

Groups and cohorts

  • Standard of care CS

    Patients undergoing curative surgery for any type of CS who will be followed through standard of care after surgery

  • MUSE intervention CS

    Patients undergoing curative surgery for any type of CS who will be introduced to and provided MUSE for use after surgery

    Other: MUSE biofeedback

Interventions

  • OtherMUSE biofeedback

    biofeedback through a headband

05

What researchers measure

Primary outcomes

  1. Quality of life (SF36)

    Score 0-100

    Time frame: periodic 0-24 months

Secondary outcomes

  1. HPA recovery

    as measured by morning cortisol. Cortisol measurement will be performes every 6-12 weeks, 24h off glucocorticoid replacement therapy starting 4 weeks-8 weeks after surgery and until cortisol is 10 mcg/dl or above ( or HPA recovery is considered impossible by investigator)

    Time frame: 0-24 months

  2. Myopathy measurement

    as measured by hand grip. Hand grip strength will be measured 3 times on left and right, and dominant hand grip strength will be considered as an average of 3 measurements.

    Time frame: 0-24 months

Other outcomes

  1. AGE

    measurement of AGE

    Time frame: 0-24 months

06

Study locations

1 of 1 sites recruiting
  • Mayo Clinic
    Rochester, Minnesota 55905, United States
    Recruiting
07

References and documents

Individual participant data

Plan to share: No

08

Registry details

Key details

Study ID
NCT04543253
Lead sponsor
Mayo Clinic
Responsible party
Irina Bancos (Principal Investigator, Mayo Clinic) — Principal investigator
First posted
Sep 10, 2020
Start date
Jul 25, 2019
Primary completion
Dec 2030 (estimated)
Completion
Dec 2030 (estimated)
Last update
Sep 18, 2026

Study contacts

Vanessa Fell, MA
Contact
fell.vanessa@mayo.edu
507-266-6068
Irina Bancos, MD, MS
principal investigator · Mayo Clinic

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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