ORPHA:276621
Sporadic pheochromocytoma/secreting paraganglioma
Publications
1
7th percentile
Trials
0
Interventional, condition-specific
Researchers
7
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
A rare, isolated, non-familial pheochromocytoma/paraganglioma tumor arising from neuroendocrine chromaffin cells of the adrenal medulla (pheochromocytoma) or from extra-adrenal chromaffin tissue (paraganglioma). The majority of these tumors are benign and the presenting symptoms are typically caused by the increased catecholamine production of the tumor, including hypertension (often paroxysmal), tachycardia, anxiety and/or excessive sweating.
How rare: How common this is has not been clearly measured.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0017190
- UMLS:C4707333
Research stages
Trial readiness signals
Where this condition sits on an open-data research pipeline — not how close a treatment is, and not medical advice. Empty stages often mean “not in these databases under this Mondo ID,” not “impossible.”
2/6 stages with a signal
No specific-condition interventional trial, but broader-category trials exist — discuss eligibility with a clinician.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
1 matched papers (1 in last 10 years) Source
- Phenotype characterisedNot checked
Not yet enriched from Monarch / HPO
- Animal modelNot checked
Not yet enriched from Monarch / Alliance
- Orphan designationNot checked
FDA/EMA orphan-drug designation not enriched yet
- Interventional trialPartial
None under the specific name; 70 for broader category paraganglioma
Biology
Genes and phenotypes
Gene–disease validity from GenCC, plus phenotypes and animal models joined from Monarch Initiative via Mondo ID — not a clinical diagnosis aid.
Do we know what causes it?
Not yet — the cause hasn't been pinned down in GenCC.
No strong gene–disease assertion joined for this Orphanet entity.
Phenotypes (Monarch / HPO)
Not enriched in this build — Monarch phenotype joins were not run for this record.
Animal models (Monarch / Alliance)
Not enriched in this build.
Literature
Is anyone studying this?
1
1 paper have ever been indexed under this name. For scale, breast cancer has over 700,000. Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=5449) is 41.
1 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 41 (publications denominator n=5449).
1 in the last 10 years · high confidence · 7th percentile (publications denominator)
Phrase hits: 1 · MeSH hits: 0
Who's working on it?
7
Distinct author names in 1 sampled paper — named people below.
Who's working on it?
No interventional trial matched this name; these authors publish on it in the sampled literature — a practical starting point for contact.
- 01Barboni B1 paper · 2022
Faculty of Biosciences and Technology for Food, Agriculture and Environment, University of Teramo, Teramo, Italy.
Papers in Europe PMC - 02Bernabò N1 paper · 2022
Faculty of Biosciences and Technology for Food, Agriculture and Environment, University of Teramo, Teramo, Italy.
Papers in Europe PMC - 03Cimini C1 paper · 2022
Faculty of Biosciences and Technology for Food, Agriculture and Environment, University of Teramo, Teramo, Italy.
Papers in Europe PMC - 04Colosimo A1 paper · 2022
Faculty of Biosciences and Technology for Food, Agriculture and Environment, University of Teramo, Teramo, Italy.
Papers in Europe PMC - 05Ramal-Sanchez M1 paper · 2022
Faculty of Biosciences and Technology for Food, Agriculture and Environment, University of Teramo, Teramo, Italy.
Papers in Europe PMC - 06Taraschi A1 paper · 2022
Faculty of Biosciences and Technology for Food, Agriculture and Environment, University of Teramo, Teramo, Italy.
Papers in Europe PMC - 07Valbonetti L1 paper · 2022
Faculty of Biosciences and Technology for Food, Agriculture and Environment, University of Teramo, Teramo, Italy.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
0
interventional trials for this specific condition
No interventional trial testing a treatment matched this specific condition name on ClinicalTrials.gov (observational studies and pan-disease registries are listed separately when present). 70 trials are registered for paraganglioma, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 27 July 2026
No matched interventional trials. This is true for 73% of diseases in the trials denominator (5114 of 7003). Here are the researchers publishing on it.
high confidence · 36.5th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.
70 interventional trials matched paraganglioma, the broader category — listed below. Those studies are not counted in the condition-specific total.
Broader category: paraganglioma
70
Interventional trials for the parent category, exclusive of NCT IDs already counted above. Eligibility for this subtype is not guaranteed.
Worth raising with a clinician. How we count trials.
Recruiting under the broader category
- NCT04119024·RECRUITING·Gene Modified Immune Cells After Conditioning Regimen for the Treatment of Stage IIIC or IV Melanoma or Metastatic Solid Tumors
Conditions: Metastatic Malignant Solid Neoplasm · Metastatic Melanoma · Pathologic Stage IIIC Cutaneous Melanoma AJCC v8 · Pathologic Stage IV Cutaneous Melanoma AJCC v8·Matched via name phrase
- NCT06377033·RECRUITING·Using the EHR to Advance Genomic Medicine Across a Diverse Health System
Conditions: Genetic Predisposition · Paraganglioma · Pheochromocytoma · ALS·Matched via name phrase
- NCT07288931·RECRUITING·Al18F-NOTA-LM3 PET/CT in Patients With Pheochromocytoma and Paraganglioma
Conditions: Pheochromocytoma/Paraganglioma (PPGL)·Matched via name phrase
- NCT07167329·RECRUITING·Real-World Effectiveness and Pharmacogenetics of Belzutifan in VHL Syndrome: The BELIEVE-VHL Trial
Conditions: Von Hippel Lindau · Von Hippel Lindau Disease · Von Hippel Lindau-Deficient Clear Cell Renal Cell Carcinoma · Hemangioblastoma (HB) of the Central Nervous System (CNS)·Matched via name phrase
- NCT07661420·NOT YET RECRUITING·211At-MABG in Adults With Advanced Neuroendocrine Cancers
Conditions: Pheochromocytoma · Paraganglioma · Neuroendocrine Tumors · Medullary Thyroid Cancer·Matched via name phrase
- NCT06607692·RECRUITING·Study in Children and Adolescents of 177Lu-DOTATATE (Lutathera®) Combined With the PARP Inhibitor Olaparib for the Treatment of Recurrent or Relapsed Solid Tumours Expressing Somatostatin Receptor (SSTR) (LuPARPed).
Conditions: Solid Tumor Cancer · Medulloblastoma · High Risk Neuroblastoma · High Grade Gliomas·Matched via name phrase
- NCT04924075·RECRUITING·Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL) Disease-Associated Tumors, Advanced Gastrointestinal Stromal Tumor (wt GIST), or Solid Tumors With HIF-2α Related Genetic Alterations (MK-6482-015)
Conditions: Pheochromocytoma/Paraganglioma · Pancreatic Neuroendocrine Tumor · Von Hippel-Lindau Disease · Advanced Gastrointestinal Stromal Tumor·Matched via name phrase
- NCT05636540·RECRUITING·In Vivo PARP-1 Expression With 18F-FluorThanatrace PET/CT in Patients With Pheochromocytoma and Paraganglioma
Conditions: Pheochromocytoma · Paraganglioma·Matched via name phrase
- NCT03344016·RECRUITING·Multicenter Pheochromocytoma and Paraganglioma Evaluation
Conditions: Pheochromocytoma · Paraganglioma·Matched via name phrase
- NCT06121271·NOT YET RECRUITING·Trial of Lu-177 DOTATATE (Lutathera®) in Unlicensed Indications
Conditions: Bronchial and Thymic Neuroendocrine Tumour · Paraganglioma/ Phaeochromocytoma · Medullary Thyroid Carcinoma · Those Requiring Repeat Peptide Receptor Radionuclide Therapy·Matched via name phrase
- NCT07714551·NOT YET RECRUITING·Zanzalintinib in Unresectable and Progressive MPGGs
Conditions: Pheochromocytoma · Paraganglioma·Matched via name phrase
- NCT06683846·RECRUITING·Ivonescimab in the Treatment of Multiple Advanced Tumors
Conditions: Pheochromocytoma/Paraganglioma · Rhabdomyosarcoma · Paget Disease, Extramammary · Renal Angiomyolipoma·Matched via name phrase
- NCT03206060·RECRUITING·Lu-177-DOTATATE (Lutathera) in Therapy of Inoperable Pheochromocytoma/ Paraganglioma
Conditions: Pheochromocytoma · Paraganglioma · Neuroendocrine Tumors · Neuroendocrine Neoplasms·Matched via name phrase
- NCT07282587·RECRUITING·Study of ONC206 (JZP3507) in Advanced Pheochromocytoma and Paraganglioma
Conditions: Advanced Pheochromocytoma and Paraganglioma · PCPG·Matched via name phrase
- NCT00107289·RECRUITING·Iodine I 131 Metaiodobenzylguanidine in Treating Patients With Recurrent, Progressive, or Refractory Neuroblastoma or Malignant Pheochromocytoma or Paraganglioma
Conditions: Neuroblastoma · Pheochromocytoma·Matched via name phrase
Where to find support
We do not yet link condition-specific patient organisations. These umbrella groups support undiagnosed and ultra-rare families:
India — NPRD
Last verified 2026-07-26This ORPHAcode is not on our curated NPRD list (direct or Mondo-parent match). That does not decide clinical eligibility; families in India should ask a notified Centre of Excellence about current coverage.
Hand-curated for this project. ORPHAcode mappings are best-effort and may be incomplete or imprecise for umbrella categories. Parent (Mondo) matches mean the policy lists a broader category — confirm eligibility with a Centre of Excellence. Financial entitlements summarised from public policy statements and may change. This is not official government guidance.
How we counted this
Europe PMC query (preferred label + any corrected label + Orphanet and Mondo exact synonyms, stoplisted; unioned with resolved MeSH labels when available). UMLS / OMIM / NCIT cross-references are stored on the overview but are not added to the query string.
"Sporadic pheochromocytoma/secreting paraganglioma"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Sporadic pheochromocytoma/secreting paraganglioma"
Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Parent-category trials query:
"paraganglioma"
Query health: ok — strategies attempted: phrase; with hits: phrase
Run this search on ClinicalTrials.gov
Confidence reasoning
- Preferred label is multi-word and distinctive
- No synonyms dropped by stoplist
- No label/synonym collisions with other diseases in this corpus
Ingested 2026-07-27T11:43:14.331Z
