ORPHA:31837
Pulmonary venoocclusive disease
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.
Is anyone studying this?
3,091
3,091 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.
3,091 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).
1,595 in the last 10 years · low confidence
Is a treatment being tested?
2
trials for this specific condition
2 interventional trials matched this specific condition name; none in our sample are currently recruiting.
Data as of 26 July 2026
2 interventional trials — more than 59.2% of diseases in the trials denominator have none at all (151 of 255; this disease is at the 74.7th percentile).
low confidence · 74.7th 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?
1,295
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.
- 01Montani D13 papers · 2026
Université Paris-Saclay, Faculté de Médecine, Le Kremlin-Bicêtre, France.
Papers in Europe PMC - 02Humbert M8 papers · 2026
Université Paris-Saclay, Faculté de Médecine, Le Kremlin-Bicêtre, France.
Papers in Europe PMC - 03Dorfmüller P7 papers · 2026
Department of Pathology, University of Giessen and Marburg Lung Center, Justus-Liebig University Giessen, Giessen, Germany.
Papers in Europe PMC - 04Hata A7 papers · 2026
Cardiovascular Research Institute, UCSF, San Francisco, California, USA.
Papers in Europe PMC - 05Prabhakar A7 papers · 2026
Cardiovascular Research Institute, UCSF, San Francisco, California, USA.
Papers in Europe PMC - 06Ghatpande P6 papers · 2026
Cardiovascular Research Institute, UCSF, San Francisco, California, USA.
Papers in Europe PMC - 07Grynblat J6 papers · 2026
School of Medicine, Université Paris- Saclay, Paris, France.
Papers in Europe PMC - 08Lagna G6 papers · 2026
Cardiovascular Research Institute, UCSF, San Francisco, California, USA.
Papers in Europe PMC - 09Escribano-Subias P5 papers · 2026
Pulmonary Hypertension Unit, Cardiology Department, Hospital Universitario 12 de Octubre, Madrid, Spain; Instituto de Investigación Hospital 12 de Octubre (i+12), Madrid, Spain; Centro de Investigación Biomédica en Red de Enfermedades Cardiovasculares (CIBERCV), Instituto de Salud Carlos III (ISCIII), Madrid, Spain; ERN-LUNG (European Reference Network on Rare Respiratory Diseases), Facultad de Medicina, Universidad Complutense de Madrid, Madrid, Spain. Electronic address: pilar.escribano.subias@gmail.com.
Papers in Europe PMC - 10Graham BB5 papers · 2025
Lung Biology Center, Pulmonary and Critical Care Medicine, Zuckerberg San Francisco General Hospital, California, USA.
Papers in Europe PMC
Recruiting interventional trials
Trials testing a treatment from the matched ClinicalTrials.gov set
2 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.
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.
"Pulmonary venoocclusive disease" OR "pulmonary capillary hemangiomatosis" OR "pulmonary veno-occlusive disease"
MeSH descriptor terms unioned into the query: Pulmonary Veno-Occlusive Disease
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Pulmonary venoocclusive disease" OR "pulmonary capillary hemangiomatosis" OR "pulmonary veno-occlusive disease"
Interventional trials matched via: both (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).
Study-type breakdown: 2 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Cross-references (from Mondo): MESH:D011668 UMLS:C0034091 NCIT:C85039
Query health: ok — strategies attempted: phrase, mesh; with hits: phrase, mesh
Run this search on ClinicalTrials.gov
Synonyms dropped by stoplist: PVOD
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
- Publication count (3091) is implausibly high for prevalence class "<1 / 1 000 000" — treat as possible over-matching, not a measure of research intensity