ORPHA:137583
Vulvar intraepithelial neoplasia
Also known as: VIN · Vulvar intraepithelial tumor
Query health: suspect — Only one of 2 strategies returned hits (phrase).
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).
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=183) is 38.
2,645 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 38 (publications denominator n=183).
1,319 in the last 10 years · medium confidence · 95.9th percentile (publications denominator)
Is a treatment being tested?
17
trials for this specific condition
17 interventional trials matched this specific condition name; none in our sample are currently recruiting.
Data as of 26 July 2026
17 interventional trials — more than 59.2% of diseases in the trials denominator have none at all (151 of 255; this disease is at the 89.2th percentile).
medium confidence · 89.2th percentile (trials denominator)
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.
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
Recruiting interventional trials
Trials testing a treatment 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
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 below 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" OR "vulvar squamous neoplasm"
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.
Cross-references (from Mondo): UMLS:C0346210 NCIT:C4756
Query health: suspect — strategies attempted: phrase, recall-expansion; 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