ORPHA:137583
Vulvar intraepithelial neoplasia
Also known as: VIN · Vulvar intraepithelial tumor
Publications
2,645
88.9th percentile
Trials
17
Interventional, condition-specific
Researchers
1,069
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
A rare vulvovaginal tumor characterized by intraepithelial neoplastic proliferation of the vulvar epithelium, histologically presenting proliferation of atypical basal cells with basal layer involvement, enlarged nuclei, hyperchromasia, pleomorphic cells and increased numbers of mitotic figures. Patients are frequently asymptomatic, although vulvar pruritus/pain/burning, dysuria and/or dyspareunia may be associated. Concurrent anogenital involvement is frequent. Two subtypes, usual type VIN (uVIN) and differentiated type VIN (dVIN) exist, with uVIN typically being associated with HPV infection and presenting multifocal, elevated lesions around the introitus and/or labia majora, and dVIN being related to chronic inflammation and lesions consisting of poorly demarcated pink or white plaques that are often associated with lichen sclerosus or lichen planus. Diffusely positive p16 immunohistochemistry and high Ki-67 proliferation index in uVIN futher differentiates this subtype from dVIN, this latter being consistently negative for p16 while presenting p53 positivity.
How rare: 1-5 / 10 000 — about one to five people per ten thousand (still uncommon, but less ultra-rare).
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0005198
- UMLS:C0346210
- NCIT:C4756
Additional Mondo synonyms (7)
intraepithelial neoplasia of the vulva · intraepithelial neoplasia of vulva · squamous vulvar intraepithelial neoplasia · vulva intraepithelial neoplasia · vulval intraepithelial neoplasia · vulvar intraepithelial tumor · vulvar intraepithelial 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
2,645 matched papers (1,319 in last 10 years) Source
- Phenotype characterisedNot found
No HPO disease–phenotype associations via Monarch for these Mondo IDs
- Animal modelNot found
No Alliance genotype “model of” associations via Monarch for these Mondo IDs
- Orphan designationNot found
No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source
- Interventional trialPresent
17 matched on ClinicalTrials.gov
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)
None returned for this Mondo ID. That often means “not linked under this ID,” not “no clinical features.”
Animal models (Monarch / Alliance)
None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.
Monarch fetch 2026-07-27
Therapies
Designations, candidates, and chemicals
FDA OOPD and EMA orphan designations, Open Targets clinical candidates, and CTD chemical associations via MyDisease.info. These never change the interventional-trial headline.
Orphan designation (FDA · EMA)
No designation matched this disease via UMLS or preferred name on the FDA OOPD mirror or EMA orphan register. Absence here is not proof that none exists under another wording.
Open Targets candidates
7
Drugs / clinical candidates · MONDO_0005198
- IMIQUIMOD·phase 3
- BIZALIMOGENE RALAPLASMID·phase 2
- CYCLOPHOSPHAMIDE·phase 2
- IRX-2·phase 2
- OMIGANAN·phase 2
- ARTESUNATE·phase 1
- DECITABINE·phase 1
CTD chemicals (MyDisease.info)
No CTD chemical associations returned for this Mondo ID.
Literature
Is anyone studying this?
2,645
2,645 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=3967) is 59.
2,645 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 59 (publications denominator n=3967).
1,319 in the last 10 years · medium confidence · 88.9th percentile (publications denominator)
Phrase hits: 2,645 · MeSH hits: 0
Who's working on it?
1,069
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.
- 01Bleeker MCG13 papers · 2026
Department of Pathology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, The Netherlands.
Papers in Europe PMC - 02van Beurden M10 papers · 2026
Department of Gynaecology, Netherlands Cancer Institute/Antoni Van Leeuwenhoek Hospital, Amsterdam, The Netherlands.
Papers in Europe PMC - 03Berkhof J9 papers · 2026
Department of Epidemiology and Data Science, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, The Netherlands.
Papers in Europe PMC - 04Voss FO9 papers · 2026
Department of Pathology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, The Netherlands.
Papers in Europe PMC - 05Steenbergen RDM8 papers · 2026
Department of Pathology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, The Netherlands.
Papers in Europe PMC - 06Duin S7 papers · 2026
Department of Pathology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, The Netherlands.
Papers in Europe PMC - 07Preti M7 papers · 2026
Department of Surgical Sciences, University of Torino, Torino, Italy mario.preti@unito.it.
Papers in Europe PMC - 08Parra-Herran C6 papers · 2026
Department of Pathology, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA. cparra-herran@bwh.harvard.edu.
Papers in Europe PMC - 09Thuijs NB6 papers · 2026
Department of Pathology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, The Netherlands.
Papers in Europe PMC - 10Gallio N5 papers · 2026
Department of Surgical Sciences, University of Torino, Torino, Italy.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
17
interventional trials for this specific condition
17 interventional trials matched this specific condition name; none in our sample are currently recruiting.
Data as of 9 September 2026
17 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 94.4th percentile).
medium confidence · 94.4th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
17 interventional trials matched after quoted-phrase search and title/condition post-filter.
No currently recruiting studies in the matched set. Open the same search on ClinicalTrials.gov.
Observational and natural-history studies
6 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
- NCT05463796·RECRUITING·InAdvance: Surveillance, Prevention, and Interception in a Population at Risk for Cancer
Confirmed·Conditions: Cancer Risk · Cancer Predisposition Syndrome · Hereditary Cancer Prediction · Childhood Cancer Survivors·Matched via name phraseBoth providers judged relevant.
Other registries (secondary)
Broader net from EU CTIS, ISRCTN, and ICTRP when available — deduped against ClinicalTrials.gov IDs already counted above. Dual-model LLM relevance gates what we keep. These rows are not added to the interventional headline.
raw 7 · after dedupe 7 · already on CT.gov 0 · kept 2 · parent 0 · uncertain 1 · dropped 4 · fetched 2026-07-27
Source notes: ictrp: Error: ICTRP public search unavailable (WHO portal is SPA-only; SOAP needs partnership). Tried: https://apps.who.int/tri
- isrctn·ISRCTN11290871·No longer recruiting·A randomised, double-blind, placebo-controlled study to evaluate the efficacy of imiquimod 5% in women with vulvar intraepithelial neoplasia (VIN) stages two and three
Confirmed — Both providers judged relevant.
- isrctn·ISRCTN98495886·No longer recruiting·A trial investigating the use of Veregen (EPIgallocatechin-3-gallate) in the treatment of Vulval Intraepithelial Neoplasia
Confirmed — Both providers judged relevant.
Uncertain / not reviewed (1)
- isrctn·ISRCTN72275160·No longer recruiting·Proactive against reactive treatment for lichen sclerosus
Uncertain — At least one provider returned uncertain or parent-category.
Where to find support
Condition-specific patient organisations, when Orphanet lists them, are on the disease’s Orphanet page. We also link umbrella groups that support undiagnosed and ultra-rare families.
Orphanet entry for Vulvar intraepithelial neoplasia — check Associations / patient organisations on that page.
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.
"Vulvar intraepithelial neoplasia" OR "Vulvar intraepithelial tumor" OR "intraepithelial neoplasia of the vulva" OR "intraepithelial neoplasia of vulva" OR "squamous vulvar intraepithelial neoplasia" OR "vulva intraepithelial neoplasia" OR "vulval intraepithelial neoplasia" OR "vulvar intraepithelial tumour"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Vulvar intraepithelial neoplasia" OR "Vulvar intraepithelial tumor" OR "intraepithelial neoplasia of the vulva" OR "intraepithelial neoplasia of vulva" OR "squamous vulvar intraepithelial neoplasia" OR "vulva intraepithelial neoplasia" OR "vulval intraepithelial neoplasia" OR "vulvar intraepithelial 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: 17 interventional · 6 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
Synonyms dropped by stoplist: VIN
Confidence reasoning
- Preferred label is multi-word and distinctive
- 1 synonym(s) dropped by stoplist (may under-count)
- No label/synonym collisions with other diseases in this corpus
Ingested 2026-07-26T02:33:05.997Z