Diagnosis of Pheochromocytoma

This study aims to find better ways to diagnose, locate, and treat pheochromocytomas (tumors that often grow on the adrenal glands and release chemicals causing high blood pressure). Current methods can miss these tumors, which can lead to serious health problems. Researchers are using two imaging agents, ([18F]-DOPA) and ([18F]-6F-DA), to see if they can improve how these tumors are found. The study also looks at the genetic and physical characteristics of these tumors to understand them better and explore potential new treatments. You might be able to join if you are at least 3 years old and have a known pheochromocytoma, based on high levels of certain chemicals in your blood or urine. The study's goal is to understand the different types of pheochromocytomas and paragangliomas (similar tumors) and find new treatment options.

Study design: This is an interventional study planning to enroll up to 3000 participants. The phase of the study is not specified.
What's involved: You would be screened with a medical history, physical exam, electrocardiogram, and blood and urine tests to see if you qualify.
Compensation: Not stated in the trial record.
Follow-up: The primary endpoints, which include studying genotypes and phenotypes, are measured at Baseline.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

Diagnosis of Pheochromocytoma

Recruiting

PHASE1Ages 3+InterventionalDiagnostic

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

~3,000 participants

Updated 2026-09-16 on ClinicalTrials.gov

What's tested:([18F]-DOPA)([18F]-6F-DA)

At a glance

Recruiting sites

1 of 1 listed site is recruiting right now

RecruitingSuspended, closed, or not yet open

What they're measuring

To study specific genotypes, biochemical and imaging phenotypes of patients with various pheochromocytomas and paragangliomas.To stuty potential treatment options for metastatic pheochromocytoma and paraganglioma using cell cultures, cell ...

Measured over Baseline

Conditions

Pheochromocytoma

Endocrine Disease

Endocrine Diseases

NCT00004847

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

National Institutes of Health Clinical Center
Bethesda, Marylandstudy coordinator listed
Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

Catherine M Gordon, M.D. · PRINCIPAL_INVESTIGATOR · Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Who to contact

Alberta Derkyi, C.R.N.P.

[email protected]

(301) 827-3355

Email the study team

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Eligibility criteria

Inclusion

Adult family members of patients enrolled in this study;

The index family member in this study has a suspected hereditary PHEO/PGL based on previous genetic testing and other suspicious hereditory patterns such as family history of multiple individuals with PHEO/PGL; early age of disease onset; multiplicity of primary tumors; recurrence, etc. and

Signed informed consent form is required

Children over 10 years old with very high suspicion of sporadic or familial PHEO/PGL based on at least one of the following:

The presence of new onset of symptoms typical of PHEO/PGL such as hypertension or hypertensive episodes, sweating, headaches, pallor, palpitations, drug resistant hypertension, etc.

Family history of PHEO/PGL or genetic pathogenic variants known to predispose individuals to develop these tumors.

The presence of a tumor on conventional imaging including ultrasound, CT and/or MRI or \[123I\]-MIBG or PET imaging not limited to \[18F\]-FDG.

Children must give informed assent and be willing to return to the NIH for follow-up.

Exclusion

Inability to lie still for the entire imaging time (e.g., cough, severe arthritis, etc.).

Inability to complete the needed investigational and standard-of-care imaging examinations due to other reasons (e.g., severe claustrophobia, radiation phobia, etc.)

Any additional medical conditions, serious illness, or other extenuating circumstance that, in the opinion of the Principal Investigator, may significantly interfere with study compliance.

Children of less than 10 years of age.

Children with impaired mental capacity that precludes informed assent.

Inability to lie still for the entire imaging time (e.g., cough, turbulent children, severe claustrophobia, etc.).

What this trial measures

To study specific genotypes, biochemical and imaging phenotypes of patients with various pheochromocytomas and paragangliomas.To stuty potential treatment options for metastatic pheochromocytoma and paraganglioma using cell cultures, cell ...Baseline
To study specific genotypes, biochemical and imaging phenotypes of patients with various pheochromocytomas and paragangliomas.To stuty potential treatment options for metastatic pheochromocytoma and paraganglioma using cell cultures, cell lines, animal

Trialytics