ORPHA:3411
Double uterus-hemivagina-renal agenesis syndrome
Also known as: Double uterus and obstructed hemivagina syndrome · HWW syndrome · Herlyn-Werner-Wunderlich syndrome · OHVIRA syndrome · Obstructed hemivagina and ipsilateral renal anomaly
Publications
917
Trials
0
Interventional, condition-specific
Researchers
939
Distinct authors in sample
Gene link
—
Readiness
1/6
Stages with a signal
Clinical definition (Orphanet)
A rare urogenital anomaly characterized by the presence of double uterus (didelphys, bicornuate or septum-complete or partial), unilateral cervico-vaginal obstruction (obstructed hemivagina-communicant, not communicant or septate and unilateral cervical atresia) and ipsilateral renal anomalies (renal agenesis and/or other urinary tract anomalies). Patients are usually diagnosed at puberty after menarche due to recurrent severe dysmenorrhea, chronic pelvic pain, excessive foul smelling mucopurulent discharge, spotting and intermenstrual bleeding (depending on the existence of uterine or vaginal communications). Fever, dyspareunia, and a palpable abdominal, pelvic or vaginal mass (mucocolpos or pyocolpos) may also be present.
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.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0008636
- MeSH:C566010
- OMIM:192050
- UMLS:C1860549
Additional Mondo synonyms (3)
Herlyn-Werner syndrome · Wunderlich syndrome · obstructed hemivagina and ipsilateral renal anomaly
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.”
1/6 stages with a signal
Research-stage checklist from open sources (GenCC, literature, Monarch when enriched, ClinicalTrials.gov). Not a prognosis or care recommendation.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
917 matched papers (653 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 trialNot found
No matched interventional trial under our ClinicalTrials.gov rules
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?
917
917 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.
917 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).
653 in the last 10 years · low confidence
Phrase hits: 917 · MeSH hits: 0
Who's working on it?
939
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.
- 01Li L5 papers · 2026
Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, Texas. Electronic address: TopLucy.Li@bcm.edu.
Papers in Europe PMC - 02Li Z4 papers · 2025
Department of Gynecology, The Second Hospital of Hebei Medical University, Shijiazhuang, Hebei, 050000, PR China.
Papers in Europe PMC - 03Zhang H4 papers · 2026
Department of Radiology, Key Laboratory of Obstetric & Gynecologic and Pediatric Diseases and Birth Defects of Ministry of Education, National Key Laboratory of Biotherapy, West China Second University Hospital, Sichuan University, China.
Papers in Europe PMC - 04Guo Y3 papers · 2023
Department of Radiology, Key Laboratory of Obstetric & Gynecologic and Pediatric Diseases and Birth Defects of Ministry of Education, National Key Laboratory of Biotherapy, West China Second University Hospital, Sichuan University, China. Electronic address: gykpanda@163.com.
Papers in Europe PMC - 05Li Y3 papers · 2025
PLA, Obstetrics and Gynecology of the Southwest Hospital of Army Medical University, Shapingba District, Gaotanyan Main Street 29, Chongqing, 400000, China. lydyzj1971@sina.com.
Papers in Europe PMC - 06Meng L3 papers · 2025
Department of Gynecology, The Second Hospital of Hebei Medical University, Shijiazhuang, Hebei, 050000, PR China.
Papers in Europe PMC - 07Aditya R2 papers · 2023
Departement of Obstetrics and Gynecology, Faculty of Medicine, Universitas Syiah Kuala, Banda Aceh, Indonesia.
Papers in Europe PMC - 08Al-shather Z2 papers · 2023
Faculty of Medicine, Århus University, Aarhus, Denmark.
Papers in Europe PMC - 09
- 10Baidada A2 papers · 2026
Gynaecology-Obstetrics and Endoscopy Department, Maternity Souissi, University Hospital Center IBN SINA, University Mohammed V, Rabat, Morocco.
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).
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.
See who's working on it — people publishing on this disease are often the practical next contact when no trial is listed.
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.
"Double uterus-hemivagina-renal agenesis syndrome" OR "Double uterus and obstructed hemivagina syndrome" OR "HWW syndrome" OR "Herlyn-Werner-Wunderlich syndrome" OR "OHVIRA syndrome" OR "Obstructed hemivagina and ipsilateral renal anomaly" OR "Herlyn-Werner syndrome" OR "Wunderlich syndrome"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Double uterus-hemivagina-renal agenesis syndrome" OR "Double uterus and obstructed hemivagina syndrome" OR "HWW syndrome" OR "Herlyn-Werner-Wunderlich syndrome" OR "OHVIRA syndrome" OR "Obstructed hemivagina and ipsilateral renal anomaly" OR "Herlyn-Werner syndrome" OR "Wunderlich syndrome"
Study-type breakdown: 0 interventional · 0 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
- Publication count (917) is implausibly high for prevalence class "<1 / 1 000 000" — treat as possible over-matching, not a measure of research intensity
Ingested 2026-07-26T23:08:23.636Z