Actively Recruiting

Phase 1
Age: 3Years - 120Years
All Genders
ID00004847

Diagnosis, Pathophysiology, and Molecular Biology of Pheochromocytoma and Paraganglioma

Led by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) · Updated on 2026-06-03

3000

Participants Needed

1

Research Sites

N/A

Total Duration

On this page

AI-Summary

What this Trial Is About

Researchers are studying pheochromocytomas and paragangliomas, rare tumors that often develop in the adrenal glands and release chemicals called catecholamines. These tumors can cause high blood pressure and serious health risks such as stroke, heart attack, and sudden death, especially during surgery or childbirth. The study aims to improve diagnosis, localization, and treatment of these tumors using advanced molecular, genetic, and imaging techniques. The study evaluates various diagnostic methods including blood and urine tests measuring catecholamines and their metabolites, standard imaging like CT, MRI, and specialized PET/CT scans with radioactive compounds such as 18F-DOPA and 18F-6F-DA. Participants with detected tumors may undergo surgery if feasible. If surgery is not an option, ongoing evaluations and medical treatments will be provided. Genetic testing is also performed to analyze DNA and explore tumor predispositions. Participants undergo comprehensive assessments including medical history, physical exams, electrocardiograms, and multiple imaging scans lasting up to two hours. Blood and urine samples are collected for biochemical and genetic analyses. Researchers monitor tumor characteristics, biochemical profiles, and treatment responses over time. The study also includes follow-up visits for ongoing evaluation, education of healthcare providers and patients, and may continue for many years.

CONDITIONS

Brief Title

Diagnosis of Pheochromocytoma

Who Can Participate

Age: 3Years - 120Years
All Genders

Eligibility Criteria

Eligible

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 studies even if biochemistry is normal
  • Personal or family history of pheochromocytoma or paraganglioma or known genetic variants predisposing to these tumors
  • Signed informed consent by patient, parent/guardian for children, or legally authorized representative
  • Patients must have an outside general practitioner or endocrinologist; metastatic patients must have an outside oncologist
  • Adult family members of patients with suspected hereditary pheochromocytoma/paraganglioma with suspicious hereditary patterns
  • Children over 10 years old with high suspicion of pheochromocytoma/paraganglioma and ability to give informed assent and return for follow-up
Not Eligible

You will not qualify if you...

  • Pregnant or breastfeeding women
  • Severe cardiac dysfunction
  • Patients currently on dialysis
  • Positive pregnancy test in women of childbearing age leads to exclusion until no longer pregnant or breastfeeding
  • Patients unwilling to return for follow-up visits for more than 2 years may be removed
  • Inability to lie still for imaging procedures due to conditions like severe arthritis or cough
  • Inability to complete imaging exams due to claustrophobia or radiation phobia
  • Any serious illness or condition that may interfere with study participation
  • Children under 10 years of age for research PET imaging
  • Children with impaired mental capacity preventing informed assent
  • Children unable to lie still for imaging due to behavior or claustrophobia

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Diagnostic Evaluation

Duration - Variable based on individual assessment

Participants undergo specialized imaging tests including PET scans using [18F]-DOPA and [18F]-6F-DA, along with CT and MRI scans to diagnose and localize pheochromocytomas and paragangliomas.

1 to 2 visits depending on imaging procedures

Long-term Monitoring

Duration - Up to 2 years or longer

Participants are monitored over time to study genotypes, biochemical markers, imaging phenotypes, and potential treatment options for metastatic cases.

Follow-up visits as scheduled over the monitoring period

Trial Site Locations

Total: 1 location

1

National Institutes of Health Clinical Center

Bethesda, Maryland, United States, 20892

Actively Recruiting

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Research Team

A

Alberta Derkyi, C.R.N.P.

C

Catherine M Gordon, M.D.

How is the study designed?

Study Type

INTERVENTIONAL

Masking

NONE

Allocation

NA

Model

SINGLE_GROUP

Primary Purpose

DIAGNOSTIC

Number of Arms

1

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Frequently Asked Questions

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Published Research Related To This Trial

Sporadic Primary Pheochromocytoma: A Prospective Intraindividual Comparison of Six Imaging Tests (CT, MRI, and PET/CT Using 68Ga-DOTATATE, FDG, 18F-FDOPA, and 18F-FDA).

Abhishek Jha, Mayank Patel, Jorge A Carrasquillo...

https://pubmed.ncbi.nlm.nih.gov/34431366