NON RARE IN EUROPE: Cortisol-producing adrenal tumor

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ORPHA:423668
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4Active trials8Treatment centers

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What is NON RARE IN EUROPE: Cortisol-producing adrenal tumor?

A cortisol-producing adrenal tumor is a growth on one of the two adrenal glands, which sit on top of your kidneys. This tumor makes too much cortisol, a hormone your body normally uses to manage stress, blood sugar, and inflammation. When cortisol levels stay too high for too long, it causes a condition called Cushing's syndrome. This disease is also sometimes called an adrenocortical adenoma or adrenal Cushing's syndrome, depending on the type of tumor involved. The excess cortisol affects almost every part of the body. People often gain weight, especially around the belly and face, develop high blood pressure, and notice their skin bruises easily or becomes thin. Muscles can become weak, bones may lose strength, and mood changes like depression or anxiety are very common. Blood sugar levels often rise, sometimes leading to diabetes. Most of these tumors are not cancerous (they are called adenomas), but some can be malignant (adrenocortical carcinoma). Treatment usually involves surgery to remove the tumor, which can lead to a full recovery in many cases. When surgery is not possible, medications that block cortisol production are available. With proper treatment, most people see a significant improvement in their symptoms and quality of life.

Key symptoms:

Weight gain, especially around the belly, face (round 'moon face'), and upper back ('buffalo hump')High blood pressureEasy bruising and thin, fragile skinMuscle weakness, especially in the thighs and upper armsStretch marks (often purple or pink) on the belly, thighs, or armsFatigue and low energyMood changes including depression, anxiety, or irritabilityHigh blood sugar or new-onset diabetesBone loss (osteoporosis) leading to fracturesIrregular or absent menstrual periods in womenReduced sex driveIncreased body or facial hair in womenSlow healing of cuts and infectionsMemory and concentration problems

Inheritance
Sporadic
Usually appears on its own, not inherited from a parent
Age of Onset
Adult
Begins in adulthood (age 18 or older)
Orphanet ↗NORD ↗

FDA & Trial Timeline

5 events
Apr 2026Metyrapone Study for Patients Diagnosed With Mild Autonomous Cortisol Secretion - MACS

Mayo Clinic — PHASE2

TrialNOT YET RECRUITING
Mar 2026IMPACT-MACS: Adrenalectomy vs Semaglutide for Metabolic Outcomes in Mild Autonomous Cortisol Secretion

University of Texas Southwestern Medical Center — NA

TrialRECRUITING
Feb 2026Isturisa Treatment in Mild Autonomous Cortisol Secretion( MACS)

Johns Hopkins University — PHASE4

TrialRECRUITING
Jan 2026Impact of 1 mg Osilodrostat Therapy on Mild Autonomous Cortisol Secretion (MACS)

Mayo Clinic — PHASE2

TrialRECRUITING
Dec 2023Metyrapone for Mild Autonomous Cortisol Secretion (MACS)

Mayo Clinic — PHASE2

TrialACTIVE NOT RECRUITING

Data is compiled from FDA regulatory filings and ClinicalTrials.gov, then processed through automated extraction; event classifications and dates may occasionally be misclassified. Verify against the linked FDA filing or trial record before clinical decisions. Updated periodically.

Treatments

Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly

No FDA-approved treatments are currently listed for NON RARE IN EUROPE: Cortisol-producing adrenal tumor.

4 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

4 recruitingView all trials with filters →

Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest

Phase 41 trial
Isturisa Treatment in Mild Autonomous Cortisol Secretion( MACS)
Phase 4
Actively Recruiting
PI: Amir Hamrahian, MD (Johns Hopkins University) · Sites: Baltimore, Maryland · Age: 18+ years
Phase 22 trials
Metyrapone for Mild Autonomous Cortisol Secretion (MACS)
Phase 2
Active — not recruiting
PI: Irina Bancos, MD (Mayo Clinic) · Sites: Rochester, Minnesota · Age: 18+ years
Impact of 1 mg Osilodrostat Therapy on Mild Autonomous Cortisol Secretion (MACS)
Phase 2
Actively Recruiting
PI: Irina Bancos, MD (Mayo Clinic) · Sites: Rochester, Minnesota · Age: 18+ years
N/A1 trial
IMPACT-MACS: Adrenalectomy vs Semaglutide for Metabolic Outcomes in Mild Autonomous Cortisol Secretion
N/A
Actively Recruiting
· Sites: Dallas, Texas · Age: 18+ years

Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)

No specialists are currently listed for NON RARE IN EUROPE: Cortisol-producing adrenal tumor.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

🏨 Children's

Children's Hospital Colorado Rare Disease Program

Children's Hospital Colorado

📍 Aurora, CO

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Boston Children's Hospital Rare Disease Program

Boston Children's Hospital

📍 Boston, MA

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

🏨 Children's

Ann & Robert H. Lurie Children's Hospital Genetics

Lurie Children's Hospital

📍 Chicago, IL

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

Cincinnati Children's Hospital Medical Center

Cincinnati Children's

📍 Cincinnati, OH

👤 Boston Children's Hospital Rare Disease Program

🏨 Children's

Nationwide Children's Hospital Rare Disease Center

Nationwide Children's Hospital

📍 Columbus, OH

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to NON RARE IN EUROPE: Cortisol-producing adrenal tumor.

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Latest news about NON RARE IN EUROPE: Cortisol-producing adrenal tumor

Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC

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Questions for your doctor

Bring these to your next appointment

  • Q1.Is my tumor benign or could it be cancerous, and how do you know?,Am I a good candidate for surgery, and what type of surgery would I need?,How long will I need to take steroid replacement medication after surgery, and what are the risks if I miss a dose?,What are the signs of an adrenal crisis and what should I do if it happens?,Should I or my family members have genetic testing to see if there is an inherited cause?,How will you monitor me after treatment to check for recurrence?,Are there any clinical trials or newer treatments I should know about?

Common questions about NON RARE IN EUROPE: Cortisol-producing adrenal tumor

What is NON RARE IN EUROPE: Cortisol-producing adrenal tumor?

A cortisol-producing adrenal tumor is a growth on one of the two adrenal glands, which sit on top of your kidneys. This tumor makes too much cortisol, a hormone your body normally uses to manage stress, blood sugar, and inflammation. When cortisol levels stay too high for too long, it causes a condition called Cushing's syndrome. This disease is also sometimes called an adrenocortical adenoma or adrenal Cushing's syndrome, depending on the type of tumor involved. The excess cortisol affects almost every part of the body. People often gain weight, especially around the belly and face, develop

How is NON RARE IN EUROPE: Cortisol-producing adrenal tumor inherited?

NON RARE IN EUROPE: Cortisol-producing adrenal tumor follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does NON RARE IN EUROPE: Cortisol-producing adrenal tumor typically begin?

Typical onset of NON RARE IN EUROPE: Cortisol-producing adrenal tumor is adult. Age of onset can vary across affected individuals.

Are there clinical trials for NON RARE IN EUROPE: Cortisol-producing adrenal tumor?

Yes — 4 recruiting clinical trials are currently listed for NON RARE IN EUROPE: Cortisol-producing adrenal tumor on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Frequently asked questions about NON RARE IN EUROPE: Cortisol-producing adrenal tumor

Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.

  1. What is NON RARE IN EUROPE: Cortisol-producing adrenal tumor?

    NON RARE IN EUROPE: Cortisol-producing adrenal tumor is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:423668). It is typically inherited as sporadic. Age of onset is generally adult. For verified primary sources, see the UniteRare NON RARE IN EUROPE: Cortisol-producing adrenal tumor page.

  2. How is NON RARE IN EUROPE: Cortisol-producing adrenal tumor inherited?

    NON RARE IN EUROPE: Cortisol-producing adrenal tumor follows sporadic inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.

  3. Are there FDA-approved treatments for NON RARE IN EUROPE: Cortisol-producing adrenal tumor?

    Approved treatments for NON RARE IN EUROPE: Cortisol-producing adrenal tumor are tracked from openFDA and DailyMed primary sources. Many rare diseases have no specific FDA-approved therapy; for those, supportive care and management of complications form the basis of clinical care. Orphan-drug-designation status is noted where applicable.

  4. Are there clinical trials recruiting for NON RARE IN EUROPE: Cortisol-producing adrenal tumor?

    UniteRare currently lists 4 clinical trials relevant to NON RARE IN EUROPE: Cortisol-producing adrenal tumor sourced from ClinicalTrials.gov. Each trial entry includes recruitment status, eligibility criteria summary, principal-investigator information, and study locations. Patients should discuss eligibility with their healthcare provider before enrolling.

  5. How do I find a specialist for NON RARE IN EUROPE: Cortisol-producing adrenal tumor?

    Verified NON RARE IN EUROPE: Cortisol-producing adrenal tumor specialists are identified through ClinicalTrials.gov principal-investigator records, peer-reviewed publication authorship (via PubMed), and the NPPES NPI registry. NORD-designated Centers of Excellence and NIH-affiliated rare-disease clinics are also tracked. UniteRare's specialist directory is updated continuously as new evidence becomes available.

See full NON RARE IN EUROPE: Cortisol-producing adrenal tumor page for complete clinical details, sources, and verified-specialist listings.

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