Actively Recruiting
Improving Diagnosis and Understanding of Pheochromocytoma and Paraganglioma Using Advanced Imaging and Genetic Testing Including Adults and Children from Age 3 and Older
Led by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) · Updated on 2026-08-04
3000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Pheochromocytomas and paragangliomas are rare tumors arising from adrenal glands or nearby tissues, causing high blood pressure due to excess catecholamine release. These tumors can be hard to detect and pose serious risks during surgery, anesthesia, or childbirth. This study aims to improve diagnosis, localization, and treatment methods by investigating genetic, molecular, imaging, and biochemical features of these tumors, including their behavior and potential therapies. Participants include adults and children aged 3 years and older with known or suspected pheochromocytoma or paraganglioma. The study involves blood and urine tests for catecholamines and related compounds, as well as various imaging scans such as CT, MRI, and specialized PETCT scans using radioactive tracers like 18F-DOPA and 18F-6F-DA. Genetic testing is also performed. If a tumor is found, surgery may be offered if surgery is not possible, ongoing evaluations and medical treatments continue. Participants undergo medical history reviews, physical exams, ECGs, and regular biochemical and imaging assessments. Follow-up visits monitor tumor presence and treatment effects. The study measures tumor genotypes, biochemical profiles, imaging characteristics, and explores potential treatments using cell studies. Education for healthcare providers and patients about these tumors is also a goal. Participation can last many years, with ongoing monitoring and data collection.
CONDITIONS
Brief Title
Diagnosis of Pheochromocytoma
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients aged 3 years and older with known, sporadic, or familial pheochromocytoma or paraganglioma
- High levels of blood or urinary catecholamines, metanephrines, methoxytyramine, or chromogranin A
- Suspicion of pheochromocytoma or paraganglioma based on imaging, even if biochemistry is normal
- Personal or family history of pheochromocytoma/paraganglioma or known genetic variants predisposing to these tumors
- Signed informed consent (patient, parent/guardian, or legally authorized representative)
- Have an outside general practitioner or endocrinologist; oncologist if metastatic disease
- Adult family members of patients with suspected hereditary pheochromocytoma/paraganglioma with informed consent
- Children over 10 years old with high suspicion based on symptoms, family history, or imaging, able to assent and return for follow-up
You will not qualify if you...
- Pregnant or breastfeeding women
- Severe cardiac dysfunction
- Currently on dialysis
- Women of childbearing potential with a positive pregnancy test at screening
- Inability or unwillingness to return for follow-up visits over 2 years
- In adults: inability to lie still for imaging, severe claustrophobia or radiation phobia, or other illnesses interfering with study compliance
- In children under 10 years old
- Children with impaired mental capacity preventing informed assent
- Inability to lie still for imaging due to conditions like severe cough or anxiety
Research Team
A
Alberta Derkyi, C.R.N.P.
C
Catherine M Gordon, M.D.
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