ORPHA:228140
Idiopathic ventricular fibrillation
Publications
1,703
Trials
2
Interventional, condition-specific
Researchers
1,069
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
A rare, genetic, cardiac rhythm disease characterized by ventricular fibrillation in the absence of any structural or functional heart disease, or known repolarization abnormalities. The presence of J waves is associated with a higher risk of nocturnal ventricular fibrillation events and a higher risk of recurrence.
How rare: How common this is has not been clearly measured.
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.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
1,703 matched papers (930 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 trialPresent
2 matched on ClinicalTrials.gov (1 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?
1,703
1,703 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.
1,703 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).
930 in the last 10 years · low confidence
Phrase hits: 1,703 · MeSH hits: 0
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.
- 01Hassink RJ13 papers · 2026
Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht, The Netherlands.
Papers in Europe PMC - 02Belhassen B12 papers · 2025
Heart Institute, Hadassah Medical Center, Jerusalem, Israel; Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel. Electronic address: bblhass@gmail.com.
Papers in Europe PMC - 03Verheul LM12 papers · 2026
Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht, The Netherlands.
Papers in Europe PMC - 04Wilde AAM12 papers · 2026
Heart Center Department of Clinical and Experimental Cardiology Amsterdam UMC, Location AMC University of Amsterdam Amsterdam Cardiovascular Sciences Amsterdam the Netherlands.
Papers in Europe PMC - 05Postema PG9 papers · 2026
Heart Center Department of Clinical and Experimental Cardiology Amsterdam UMC, Location AMC University of Amsterdam Amsterdam Cardiovascular Sciences Amsterdam the Netherlands.
Papers in Europe PMC - 06Volders PGA9 papers · 2026
Department of Cardiology, Maastricht University Medical Center, P. Debyelaan 25, 6229 HX Maastricht, The Netherlands.
Papers in Europe PMC - 07Groeneveld SA8 papers · 2024
Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht, The Netherlands.
Papers in Europe PMC - 08Duchateau J7 papers · 2026
Université de Bordeaux, CRCTB U1045, Inserm, France (M.H., J.D., G.C., E.S., F.S., O.B.).
Papers in Europe PMC - 09Gandjbakhch E7 papers · 2024
AP-HP, cardiology department, Institute of cardiology, Institute for cardiometabolism and nutrition (ICAN), Pitié-Salpêtrière hospital, Paris, France; Sorbonne université, Inserm 1166, Paris, France; AP-HP, département de génétique, Centre de référence des maladies cardiaques héréditaires ou rares, Pitié-Salpêtrière hospital, Paris, France.
Papers in Europe PMC - 10Surget E7 papers · 2025
IHU Liryc, Electrophysiology and Heart Modeling Institute, Foundation Bordeaux Université, Bordeaux, France.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
2
interventional trials for this specific condition
2 interventional trials matched this specific condition name; 1 currently recruiting in our sample.
Data as of 27 July 2026
2 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 82.4th percentile).
low confidence · 82.4th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
2 interventional trials matched after quoted-phrase search and title/condition post-filter.
- NCT07405229·RECRUITING·MEdical Treatment in Idiopathic Ventricular Fibrillation Patients
Conditions: Idiopathic Ventricular Fibrillation · Cardiac Arrest, Out-Of-Hospital·Matched via name phrase
Observational and natural-history studies
2 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
- NCT06943365·RECRUITING·Role of Anti-TREK-1 Autoantibodies in SCVF
Conditions: Short-coupled Ventricular Fibrillation · Idiopathic Ventricular Fibrillation·Matched via name phrase
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.
"Idiopathic ventricular fibrillation"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Idiopathic ventricular fibrillation"
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: 2 interventional · 2 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 (1703) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity
Ingested 2026-07-27T10:02:51.930Z