ORPHA:329217
Cerebral sinovenous thrombosis
Also known as: CSVT
Publications
596
86.6th percentile
Trials
0
Interventional, condition-specific
Researchers
1,107
Distinct authors in sample
Gene link
—
Readiness
1/6
Stages with a signal
Clinical definition (Orphanet)
A rare, potentially life-threatening, circulatory system disease characterized by variable signs and symptoms which may include headache, , altered mental status, intracranial hypertension and cavernous sinus syndrome, among others.
How rare: How common this is has not been clearly measured.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0017993
- UMLS:C0338573
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
596 matched papers (348 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?
596
596 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.
596 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).
348 in the last 10 years · medium confidence · 86.6th percentile (publications denominator)
Phrase hits: 596 · MeSH hits: 0
Who's working on it?
1,107
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.
- 01deVeber G8 papers · 2026
Stroke Program, Division of Neurology, The Hospital for Sick Children, Toronto, Ontario, Canada.
Papers in Europe PMC - 02Dlamini N8 papers · 2026
Stroke Program, Division of Neurology, The Hospital for Sick Children, Toronto, Ontario, Canada. Electronic address: nomazulu.dlamini@sickkids.ca.
Papers in Europe PMC - 03Beslow LA7 papers · 2026
Division of Neurology, Children's Hospital of Philadelphia, Departments of Neurology and Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
Papers in Europe PMC - 04Goldenberg NA6 papers · 2025
Department of Health Informatics, Data Coordinating Center for Pediatric Multicenter Studies, Johns Hopkins All Children's Institute for Clinical and Translational Research, St. Petersburg, Florida.
Papers in Europe PMC - 05Kirton A6 papers · 2026
Department of Pediatrics, University of Calgary, Calgary, AB, Canada; Department of Clinical Neuroscience, University of Calgary, Calgary, AB, Canada; Department of Radiology, Faculty of Medicine, University of Calgary, Calgary, AB, Canada; Alberta Children's Hospital Research Institute, Calgary, AB, Canada; Hotchkiss Brain Institute, Calgary, AB, Canada; Calgary Pediatric Stroke Program, University of Calgary, Calgary, AB, Canada. Electronic address: adam.kirton@ahs.ca.
Papers in Europe PMC - 06Moharir M6 papers · 2021
Stroke Program, Division of Neurology, The Hospital for Sick Children, Toronto, Ontario, Canada.
Papers in Europe PMC - 07Raffini L6 papers · 2025
Division of Hematology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Papers in Europe PMC - 08de Vries LS5 papers · 2026
Division of Perinatology, Department of Neonatology, Wilhelmina Children's Hospital, University Medical Centre Utrecht, Utrecht, The Netherlands. Electronic address: l.s.devries@umcutrecht.nl.
Papers in Europe PMC - 09Dzietko M5 papers · 2026
Department of Paediatrics I, Neonatology, University Duisburg-Essen, Essen, Germany.
Papers in Europe PMC - 10Whitworth H5 papers · 2025
Division of Hematology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. Electronic address: whitworthh@chop.edu.
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.
medium 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.
"Cerebral sinovenous thrombosis"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Cerebral sinovenous thrombosis"
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
Synonyms dropped by stoplist: CSVT
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 2026-07-27T13:46:13.493Z