RARE DISEASERESEARCH ATLAS

ORPHA:424982

Biliary cystadenocarcinoma

low confidenceDisorder

Also known as: Intrahepatic bile duct cystadenocarcinoma

Publications

822

Trials

0

Interventional, condition-specific

Researchers

1,231

Distinct authors in sample

Gene link

Readiness

2/6

Stages with a signal

How rare: <1 / 1 000 000 — fewer than one in a million. In a city the size of Kolkata, that might mean on the order of fifteen people.

Orphanet entry

Cross-references

Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.

Additional Mondo synonyms (1)

intrahepatic bile duct cystadenocarcinoma

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.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    822 matched papers (358 in last 10 years) Source

  3. Phenotype characterisedNot checked

    Not yet enriched from Monarch / HPO

  4. Animal modelNot checked

    Not yet enriched from Monarch / Alliance

  5. Orphan designationNot checked

    FDA/EMA orphan-drug designation not enriched yet

  6. Interventional trialPartial

    None under the specific name; 31 for broader category cystadenocarcinoma

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?

822

822 papers have been published on this condition. That is a real research literature — still far smaller than common diseases (breast cancer: over 700,000 papers). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=5449) is 41.

822 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).

358 in the last 10 years · low confidence

Phrase hits: 822 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,231

Distinct author names in 200 sampled papers — 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.

  1. 01
    He L3 papers · 2015

    Department of Hepatobiliary Surgery, People's Liberation Army General Hospital, Beijing 100853, China.

    Papers in Europe PMC
  2. 02
    Hwang S3 papers · 2022

    Division of Hepatobiliary Surgery and Liver Transplantation, Department of Surgery, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea.

    Papers in Europe PMC
  3. 03
    Li XL3 papers · 2025

    Department of Interventional Radiology, the First College of Clinical Medical Science, China Three Gorges University, Yichang, 443003, Hubei Province, China.

    Papers in Europe PMC
  4. 04
    Liang Y3 papers · 2021

    Department of Hepatobiliary Surgery, People's Liberation Army General Hospital, Beijing 100853, China.

    Papers in Europe PMC
  5. 05
    Liu C3 papers · 2025

    Hepatobiliary and Pancreatic Surgery, Tongde Hospital of Zhejiang Province, 310012, Hangzhou, Zhejiang Province, China.

    Papers in Europe PMC
  6. 06
    Liu L3 papers · 2026

    Department of Ultrasound Diagnostics, The Affiliated Hospital of Guangdong Medical University, Zhanjiang, China.

    Papers in Europe PMC
  7. 07
    Wan T3 papers · 2015

    Department of Hepatobiliary Surgery, People's Liberation Army General Hospital, Beijing 100853, China.

    Papers in Europe PMC
  8. 08
    Wang S3 papers · 2025

    Beijing Municipal Key Laboratory of Child Development and Nutriomics, Capital Institute of Pediatrics, Beijing, China.

    Papers in Europe PMC
  9. 09
    Yang Y3 papers · 2025

    State Key Laboratory of Molecular Oncology, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, China.

    Papers in Europe PMC
  10. 10
    Zhang X3 papers · 2025

    Department of Gastroenterology, Affiliated Hangzhou First People's Hospital, School of Medicine, Westlake University, Hangzhou, Zhejiang, China.

    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). 31 trials are registered for cystadenocarcinoma, 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.

low 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.

31 interventional trials matched cystadenocarcinoma, the broader category — listed below. Those studies are not counted in the condition-specific total.

Broader category: cystadenocarcinoma

31

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.

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 2026-07-26

This 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.

"Biliary cystadenocarcinoma" OR "Intrahepatic bile duct cystadenocarcinoma"

Run this search on Europe PMC

ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):

"Biliary cystadenocarcinoma" OR "Intrahepatic bile duct cystadenocarcinoma"

Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.

Parent-category trials query:

"cystadenocarcinoma"

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
  • Publication count (822) is implausibly high for prevalence class "<1 / 1 000 000" — treat as possible over-matching, not a measure of research intensity

Ingested 2026-07-27T15:58:03.627Z