RARE DISEASERESEARCH ATLAS

ORPHA:494418

Vulvar carcinoma

high confidenceDisorder

Also known as: Carcinoma of vulva

Publications

7,236

96.6th percentile

Trials

30

Interventional, condition-specific

Researchers

1,176

Distinct authors in sample

Gene link

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A group of rare tumors of the vulva comprising HPV-associated and HPV-independent squamous cell carcinomas as the most frequent malignant vulvar tumors, basal cell carcinomas, adenocarcinomas, and Bartholin gland carcinomas. Depending on the type of tumor and disease stage, patients may present with a painless vulvar mass or ulcer, or with pruritus, a burning sensation, pain, or bleeding.

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.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (6)

carcinoma of mammalian vulva · carcinoma of the vulva · carcinoma of vulva · mammalian vulva carcinoma · vulva carcinoma · vulvar carcinoma

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.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    7,236 matched papers (3,345 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 trialPresent

    30 matched on ClinicalTrials.gov (11 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?

7,236

7,236 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.

7,236 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).

3,345 in the last 10 years · high confidence · 96.6th percentile (publications denominator)

Phrase hits: 7,236 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,176

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.

  1. 01
    Nigdelis MP11 papers · 2026

    Department of Gynecology and Obstetrics, Saarland University Medical Center (UKS), 66424 Homburg, Germany.

    Papers in Europe PMC
  2. 02
    Klamminger GG10 papers · 2026

    Department of General and Special Pathology, Saarland University (USAAR), 66424 Homburg, Germany.

    Papers in Europe PMC
  3. 03
    Wagner M10 papers · 2026

    Department of General and Special Pathology, Saarland University (USAAR), 66424 Homburg, Germany.

    Papers in Europe PMC
  4. 04
    Bitterlich A8 papers · 2025

    Department of General and Special Pathology, Saarland University (USAAR), 66424 Homburg, Germany.

    Papers in Europe PMC
  5. 05
    Hasenburg A8 papers · 2026

    Department of Obstetrics and Gynecology, University Medical Center of the Johannes Gutenberg University Mainz, Langenbeckstraße 1, 55131, Mainz, Germany.

    Papers in Europe PMC
  6. 06
    Solomayer EF8 papers · 2025

    Department of Gynecology and Obstetrics, Saarland University Medical Center (UKS), 66424 Homburg, Germany.

    Papers in Europe PMC
  7. 07
    Garganese G7 papers · 2026

    Female External Genital Surgery Unit, Division of Gynecological Oncology, Department of Women's, Children's and Public Health Sciences, Fondazione Policlinico Universitario A. Gemelli IRCCS, 00168 Rome, Italy.

    Papers in Europe PMC
  8. 08
    Fragomeni SM5 papers · 2026

    UOC Ginecologia Oncologica, Dipartimento di Scienze della Salute della Donna, del Bambino e di Sanità Pubblica, Fondazione Policlinico Universitario A. Gemelli, IRCCS, Rome, Italy.

    Papers in Europe PMC
  9. 09
    Schnöder L5 papers · 2025

    Saarland University Medical Center for Tumor Diseases (UTS), Saarland University (USAAR), 66424 Homburg, Germany.

    Papers in Europe PMC
  10. 10
    Bifulco G4 papers · 2026

    Department of Public Health, School of Medicine, University of Naples Federico II, 80138 Naples, Italy.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

30

interventional trials for this specific condition

30 interventional trials matched this specific condition name; 11 currently recruiting in our sample.

Data as of 27 July 2026

30 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 95.7th percentile).

high confidence · 95.7th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

30 interventional trials matched after quoted-phrase search and title/condition post-filter.

Observational and natural-history studies

7 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

Open the complete matched search on ClinicalTrials.gov

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.

"Vulvar carcinoma" OR "Carcinoma of vulva" OR "Carcinoma of the vulva" OR "carcinoma of mammalian vulva" OR "carcinoma of the mammalian vulva" OR "mammalian vulva carcinoma" OR "vulva carcinoma"

Run this search on Europe PMC

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

"Vulvar carcinoma" OR "Carcinoma of vulva" OR "Carcinoma of the vulva" OR "carcinoma of mammalian vulva" OR "carcinoma of the mammalian vulva" OR "mammalian vulva carcinoma" OR "vulva carcinoma"

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: 30 interventional · 7 observational · 0 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 multi-word and distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-27T17:29:10.627Z