RARE DISEASERESEARCH ATLAS
Open navigation menu

ORPHA:890

Hepatic veno-occlusive disease

low confidenceDisorder

Also known as: Sinusoidal obstruction syndrome

Publications

14,891

Trials

18

Interventional, condition-specific

Researchers

1,313

Distinct authors in sample

Gene link

—

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A rare vascular liver disease characterized by toxic injury to the hepatic sinusoidal capillaries that leads to obstruction of the small hepatic veins and sinusoids. Clinical manifestations include painful , jaundice, and fluid retention that manifests by weight gain, edemas, and ascites.

How rare: How common this is has not been clearly measured.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (4)

Budd Chiari Syndrome · hepatic Vod · liver veno-occlusive disease · sinusoidal obstruction syndrome

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

    14,891 matched papers (7,177 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

    18 matched on ClinicalTrials.gov (3 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?

14,891

14,891 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.

14,891 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).

7,177 in the last 10 years · low confidence

Phrase hits: 14,891 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,313

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
    Liu Y8 papers · 2026

    Postgraduate Training Base of Jinzhou Medical University (The PLA Rocket Force Characteristic Medical Center), Beijing, China.

    Papers in Europe PMC
  2. 02
    Chen Y7 papers · 2026

    Department of Pharmacy, The First Affiliated Hospital of Guangxi Medical University, Nanning, Guangxi, China.

    Papers in Europe PMC
  3. 03
    Zhang F6 papers · 2026

    School of Medicine, Southeast University, Nanjing, Jiangsu, China.

    Papers in Europe PMC
  4. 04
    Chen J5 papers · 2026

    Lishui District Jingqiao Central Health Center, Nanjing, Jiangsu, China.

    Papers in Europe PMC
  5. 05
    Wang L5 papers · 2026

    Department of Gastroenterology, Nanjing Drum Tower Hospital, Affiliated Hospital of Medical School, Nanjing University, Nanjing, Jiangsu, China.

    Papers in Europe PMC
  6. 06
    Zhang Y5 papers · 2026

    Department of Radiation Oncology, First Affiliated Hospital of Kunming Medical University, Kunming, China.

    Papers in Europe PMC
  7. 07
    Li S4 papers · 2026

    BGI Genomics, BGI-Shenzhen, Shenzhen, China

    Papers in Europe PMC
  8. 08
    Wang H4 papers · 2026

    Center for Interventional Medicine, The Fifth Affiliated Hospital, Sun Yat-sen University, Zhuhai, Guangdong Province, China

    Papers in Europe PMC
  9. 09
    Wang J4 papers · 2026

    Endoscopy Center, Zhongshan Hospital, Fudan University, Shanghai, China.

    Papers in Europe PMC
  10. 10
    Wang X4 papers · 2026

    Department of Interventional Radiology, Zhongshan Hospital Fudan University, Fudan University, 180 Fenglin Road, Shanghai, 200032, China. 18211320012@fudan.edu.cn.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

18

interventional trials for this specific condition

18 interventional trials matched this specific condition name; 3 currently recruiting in our sample.

Data as of 27 July 2026

18 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 94.1th percentile).

low confidence · 94.1th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

11 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.

"Hepatic veno-occlusive disease" OR "Sinusoidal obstruction syndrome" OR "Budd Chiari Syndrome" OR "hepatic Vod" OR "liver veno-occlusive disease"

Run this search on Europe PMC

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

"Hepatic veno-occlusive disease" OR "Sinusoidal obstruction syndrome" OR "Budd Chiari Syndrome" OR "hepatic Vod" OR "liver veno-occlusive disease"

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: 18 interventional · 11 observational · 1 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 (14891) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-26T15:47:04.611Z