ORPHA:97279
Insulinoma
Publications
26,273
98.7th percentile
Trials
31
Interventional, condition-specific
Researchers
1,068
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
A form of functioning pancreatic neuroendocrine tumor characterized most commonly by a solitary, small pancreatic lesion that causes hyperinsulinemic .
How rare: 1-9 / 1 000 000 — roughly one to nine people per million. In a city the size of Kolkata, perhaps a few dozen.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0005048
- UMLS:C5848150
- NCIT:C3140
Additional Mondo synonyms (24)
Beta cell tumor · Beta cell tumor of pancreas · Beta cell tumor of the pancreas · Beta cell tumour · Beta cell tumour of pancreas · Beta cell tumour of the pancreas · beta cell neoplasm · beta cell tumor of the pancreas · beta cell tumour of the pancreas · insulin-producing islet cell tumor · insulin-producing islet cell tumour · insulin-producing tumor of islet cells · insulin-producing tumor of the islet cells · insulin-producing tumour of islet cells · insulin-producing tumour of the islet cells · pancreatic Beta cell tumor · pancreatic Beta cell tumour · pancreatic insulin producing NET · pancreatic insulin producing neoplasm · pancreatic insulin producing tumor · pancreatic insulin producing tumour · pancreatic insulin-producing neuroendocrine tumor · pancreatic insulin-producing tumor · pancreatic insulin-producing tumour
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
An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
26,273 matched papers (11,809 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 trialPresent
31 matched on ClinicalTrials.gov (1 recruiting in sample)
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?
26,273
26,273 papers — among the better-studied rare conditions, though still a fraction of common-disease literature (breast cancer: over 700,000). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=5449) is 41.
26,273 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).
11,809 in the last 10 years · medium confidence · 98.7th percentile (publications denominator)
Phrase hits: 26,273 · MeSH hits: 0
Who's working on it?
1,068
Distinct author names in 200 sampled papers — named people below.
Who's working on it?
People publishing on this condition (sampled Europe PMC records). Affiliation is the most recent found in that sample.
- 01Luo Y5 papers · 2025
Department of Nuclear Medicine, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, P. R. China. luoyaping@live.com.
Papers in Europe PMC - 02Xu Q5 papers · 2026
Department of General Surgery, Peking Union Medical College Hospital, Chinese Academy of Medical Science and Peking Union Medical College, Beijing, China.
Papers in Europe PMC - 03Feng J4 papers · 2025
Department of Pathology, Children's Hospital of Fudan University, Shanghai, China.
Papers in Europe PMC - 04Liu S4 papers · 2026
Department of Nuclear Medicine, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, P. R. China.
Papers in Europe PMC - 05Pan Q4 papers · 2025
From the Department of Nuclear Medicine, State Key Laboratory of Complex Severe and Rare Diseases, Beijing Key Laboratory of Molecular Targeted Diagnosis and Therapy in Nuclear Medicine, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences, Peking Union Medical College, Beijing, China.
Papers in Europe PMC - 06Verma P4 papers · 2026
Homi Bhabha National Institute, Anushaktinagar, Mumbai, 400094, India.
Papers in Europe PMC - 07Wang X4 papers · 2026
State Key Laboratory of Complex Severe and Rare Diseases, Beijing, China.
Papers in Europe PMC - 08Zhang H4 papers · 2026
Department of Nuclear Medicine, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, P. R. China.
Papers in Europe PMC - 09Chen J3 papers · 2026
Department of Pathology, Peking Union Medical College Hospital, Peking Union Medical College, Chinese Academy of Medical Sciences, Beijing, China.
Papers in Europe PMC - 10Fujimoto H3 papers · 2026
Radioisotope Research Center, Agency for Health, Safety and Environment, Kyoto University, Kyoto, Japan.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
31
interventional trials for this specific condition
31 interventional trials matched this specific condition name; 1 currently recruiting in our sample.
Data as of 27 July 2026
31 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 95.8th percentile).
medium confidence · 95.8th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
31 interventional trials matched after quoted-phrase search and title/condition post-filter.
- NCT02021604·RECRUITING·Fluorodopa F 18 in Congenital Hyperinsulinism and Insulinoma
Conditions: Congenital Hyperinsulinism · Insulinoma·Matched via name phrase
Observational and natural-history studies
8 observational studies match this condition. These do not test a treatment and are not counted in the interventional-trial headline, but they are genuine research: natural-history work often defines the endpoints needed for a future rare-disease trial, and families may be able to enroll.
Recruiting or not-yet-recruiting
- NCT07585032·RECRUITING·Safety and Efficacy of EUS-RFA in Pancreatic Insulinoma
Conditions: Insulinoma; Pancreas·Matched via name phrase
- NCT06725693·RECRUITING·Glucagon-like Peptide-1 Receptor PET/CT in GLP-1R Related Disease
Conditions: GLP1-R-related Disease · Tumor · Insulinoma · Positron Emission Tomography·Matched via name phrase
- NCT00001276·RECRUITING·Diagnosing and Treating Low Blood Sugar Levels
Conditions: Hypoglycemia · Insulinoma·Matched via name phrase
- NCT07272187·RECRUITING·Endoscopic Ultrasound-guided Radiofrequency Ablation for Upper Gastrointestinal Tract Lesions
Conditions: Insulinoma; Pancreas · MEN1 · NETs · Radiofrequency Ablation·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.
"Insulinoma" OR "Beta cell tumor" OR "Beta cell tumor of pancreas" OR "Beta cell tumor of the pancreas" OR "Beta cell tumour" OR "Beta cell tumour of pancreas" OR "Beta cell tumour of the pancreas" OR "beta cell neoplasm" OR "insulin-producing islet cell tumor" OR "insulin-producing islet cell tumour" OR "insulin-producing tumor of islet cells" OR "insulin-producing tumor of the islet cells" OR "insulin-producing tumour of islet cells" OR "insulin-producing tumour of the islet cells" OR "pancreatic Beta cell tumor" OR "pancreatic Beta cell tumour" OR "pancreatic insulin producing NET" OR "pancreatic insulin producing neoplasm" OR "pancreatic insulin producing tumor" OR "pancreatic insulin producing tumour" OR "pancreatic insulin-producing neuroendocrine tumor" OR "pancreatic insulin-producing tumor" OR "pancreatic insulin-producing tumour"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Insulinoma" OR "Beta cell tumor" OR "Beta cell tumor of pancreas" OR "Beta cell tumor of the pancreas" OR "Beta cell tumour" OR "Beta cell tumour of pancreas" OR "Beta cell tumour of the pancreas" OR "beta cell neoplasm" OR "insulin-producing islet cell tumor" OR "insulin-producing islet cell tumour" OR "insulin-producing tumor of islet cells" OR "insulin-producing tumor of the islet cells" OR "insulin-producing tumour of islet cells" OR "insulin-producing tumour of the islet cells" OR "pancreatic Beta cell tumor" OR "pancreatic Beta cell tumour" OR "pancreatic insulin producing NET" OR "pancreatic insulin producing neoplasm" OR "pancreatic insulin producing tumor" OR "pancreatic insulin producing tumour" OR "pancreatic insulin-producing neuroendocrine tumor" OR "pancreatic insulin-producing tumor" OR "pancreatic insulin-producing tumour"
Interventional trials matched via: phrase (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).
Study-type breakdown: 31 interventional · 8 observational · 2 expanded access. Only interventional studies enter the trial headline.
Query health: ok — strategies attempted: phrase; with hits: phrase
Run this search on ClinicalTrials.gov
Confidence reasoning
- Preferred label is short or not clearly distinctive
- No synonyms dropped by stoplist
- No label/synonym collisions with other diseases in this corpus
Ingested 2026-07-27T05:05:09.865Z
