Endocrine

Pheochromocytoma and Paraganglioma

Also known as PPGL, pheo, pheochromocytoma, SDH-related paraganglioma

Pheochromocytoma and Paraganglioma are rare catecholamine-secreting tumours arising from chromaffin cells of the adrenal medulla (pheochromocytoma) or extra-adrenal sympathetic and parasympathetic ganglia (paraganglioma). Approximately 40%

ORPHA:29072 ↗Gene SDHAGene SDHBGene SDHCGene SDHDGene RETGene VHLPrevalence 2–8 per million per yearOnset Any age; hereditary forms often in third to fifth decadeAutosomal dominant (hereditary forms, ~40% of cases)

35

studies recruiting now

as of 7 Sept 2026

165

studies registered in total

as of 7 Sept 2026

25

countries with a recruiting site

as of 7 Sept 2026

11 Jun 2021

most recent study posted

among recruiting studies

Recruiting trials

Showing the 5 most recently updated recruiting studies, as recorded 7 Sept 2026. Live status on each study page.

See all 35 recruiting studies

Where recruiting studies are running

Countries with at least one recruiting site among the studies above, 7 Sept 2026. Tap a country to search trials there.

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About Pheochromocytoma and Paraganglioma

Pheochromocytoma and Paraganglioma are rare catecholamine-secreting tumours arising from chromaffin cells of the adrenal medulla (pheochromocytoma) or extra-adrenal sympathetic and parasympathetic ganglia (paraganglioma). Approximately 40% of cases are caused by germline mutations in one of over 20 susceptibility genes, with SDH subunit mutations (particularly SDHB) associated with a markedly elevated risk of malignant disease and metastasis. Diagnosis relies on measurement of fractionated metanephrines in plasma or urine combined with functional imaging using 68Ga-DOTATATE or 123I-MIBG scintigraphy.

Common clinical features

Hypertension, often paroxysmal or refractoryHeadache, palpitations, and diaphoresis (classic triad)Pallor during hypertensive crisesAnxiety and panic-like episodesHyperglycaemiaWeight lossIncidentally discovered adrenal or para-aortic massMetastatic disease (lymph nodes, bone, liver, lung) in malignant PPGL

From Orphanet’s phenotype annotations (CC BY 4.0). Not a complete list.

Before you apply

Things trial teams commonly ask about for Pheochromocytoma and Paraganglioma. Not eligibility rules; those are set by each study.

  • Germline genetic testing is recommended for all PPGL patients regardless of family history; the specific mutation (especially SDHB for malignant risk) affects eligibility for targeted systemic therapy trials.
  • Biochemical evidence of active catecholamine secretion (elevated plasma metanephrines) is required for most trials; ensure results are collected under standardised conditions (fasting, supine, off interfering medications).
  • For malignant PPGL trials, prior treatment lines (surgery, MIBG therapy, chemotherapy) and measurable disease by RECIST criteria on cross-sectional imaging are standard eligibility requirements.

Related conditions

Information, not medical advice. Trial listings are shown as recorded on ClinicalTrials.gov; whether any study is right for you is a decision for you and your clinicians, and eligibility is decided by each research team. Disease information from Orphanet (CC BY 4.0).