ORPHA:698260
Carotid web
Also known as: AFMD · Atypical FMD · Atypical fibromuscular dysplasia · CaW · Carotid diaphragm
Publications
453
Trials
1
Interventional, condition-specific
Researchers
1,083
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
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
453 matched papers (425 in last 10 years) Source
- Phenotype characterisedNot found
No HPO disease–phenotype associations via Monarch for these Mondo IDs
- Animal modelNot found
No Alliance genotype “model of” associations via Monarch for these Mondo IDs
- Orphan designationNot found
No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source
- Interventional trialPresent
1 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)
None returned for this Mondo ID. That often means “not linked under this ID,” not “no clinical features.”
Animal models (Monarch / Alliance)
None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.
Monarch fetch 2026-07-27
Therapies
Designations, candidates, and chemicals
FDA OOPD and EMA orphan designations, Open Targets clinical candidates, and CTD chemical associations via MyDisease.info. These never change the interventional-trial headline.
Orphan designation (FDA · EMA)
No designation matched this disease via UMLS or preferred name on the FDA OOPD mirror or EMA orphan register. Absence here is not proof that none exists under another wording.
Open Targets candidates
No drugs or clinical candidates returned for this Mondo ID on Open Targets.
CTD chemicals (MyDisease.info)
No CTD chemical associations returned for this Mondo ID.
Literature
Is anyone studying this?
453
453 papers have ever been published on this condition (under this name). For scale, breast cancer has over 700,000. Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.
453 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 59 (publications denominator n=3967).
425 in the last 10 years · low confidence
Phrase hits: 453 · MeSH hits: 0
Who's working on it?
1,083
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.
- 01Nossek E15 papers · 2026
Department of Neurosurgery, NYU Langone Health, New York, New York, USA.
Papers in Europe PMC - 02Grin EA10 papers · 2026
Department of Neurosurgery, NYU Grossman School of Medicine, New York, New York, USA. Electronic address: Eric.Grin@nyulangone.org.
Papers in Europe PMC - 03
- 04Haussen DC8 papers · 2026
Neurology Department, Grady Memorial Hospital-Atlanta, United States.
Papers in Europe PMC - 05Raz E8 papers · 2026
Department of Radiology, NYU Langone Health, New York, New York, USA.
Papers in Europe PMC - 06Shapiro M8 papers · 2026
Department of Radiology, NYU Langone Health, New York, New York, USA.
Papers in Europe PMC - 07Rostanski SK7 papers · 2026
Department of Neurology, NYU Langone Health, New York, New York, USA.
Papers in Europe PMC - 08Sharashidze V7 papers · 2026
Department of Neurosurgery, NYU Grossman School of Medicine, New York, New York, USA; Department of Neurology, NYU Grossman School of Medicine, New York, New York, USA; Department of Radiology, NYU Grossman School of Medicine, New York, New York, USA.
Papers in Europe PMC - 09Chen A6 papers · 2026
Department of Neurology, NYU Grossman School of Medicine, New York, New York, USA.
Papers in Europe PMC - 10Menon BK6 papers · 2026
Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
1
interventional trials for this specific condition
1 interventional trial matched this specific condition name; 1 currently recruiting in our sample.
Data as of 9 September 2026
1 interventional trial — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 80.1th percentile).
low confidence · 80.1th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
1 interventional trials matched after quoted-phrase search and title/condition post-filter.
- NCT06336083·RECRUITING·Familial Form of Carotid Web: a Doppler Ultrasound Study
Uncertain·Conditions: Carotid Web·Matched via name phraseAt least one provider returned uncertain or parent-category.
Observational and natural-history studies
5 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
- NCT07495241·RECRUITING·Prevalence of Carotid Web in Youth
Uncertain·Conditions: Carotid Web·Matched via name phraseAt least one provider returned uncertain or parent-category.
Other registries (secondary)
Broader net from EU CTIS, ISRCTN, and ICTRP when available — deduped against ClinicalTrials.gov IDs already counted above. Dual-model LLM relevance gates what we keep. These rows are not added to the interventional headline.
raw 13 · after dedupe 13 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 13 · dropped 0 · fetched 2026-07-27
Source notes: ictrp: Error: ICTRP public search unavailable (WHO portal is SPA-only; SOAP needs partnership). Tried: https://apps.who.int/tri
No secondary-registry studies passed dual-model relevance for this condition name (after dedupe).
Uncertain / not reviewed (13)
- isrctn·ISRCTN22619658·Recruiting·The Imperial College comprehensive study of people with chronic damage to small blood vessels in the brain to define underlying mechanisms
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN96178713·Recruiting·Stopping or continuing blood thinners after stroke at young age without a known cause: STOP trial
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN12408874·Recruiting·Severe atherosclerosis in the neck arteries (carotid stenosis) - an observational study
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN14956654·No longer recruiting·Carotid artery stenting during endovascular treatment of acute ischemic stroke
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN12685153·No longer recruiting·SOLVE: Sodium valproate to prevent stroke
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN12609324·No longer recruiting·The GFR-Exercise feasibility study
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN19922220·No longer recruiting·Endovascular treatment of acute ischemic stroke in the Netherlands for late arrivals
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN76741621·No longer recruiting·Endovascular treatment for acute ischemic stroke; the use of periprocedural heparin or antiplatelet agents
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN80619088·No longer recruiting·Is intravenous alteplase still of added benefit in patients with acute ischaemic stroke who undergo intra-arterial treatment?
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN43245574·No longer recruiting·Treatment with medications that prevent the formation of blood clots, in the primary prevention of heart disease in patients with a stable lung condition called Chronic Obstructive Pulmonary Disease (COPD)
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN82217627·No longer recruiting·Prevention of complications to Improve outcome in elderly patients with acute stroke - A randomised clinical trial
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN11062950·No longer recruiting·Comparison of the effects of an oral contraceptive with those of a combined therapy with insulin sensitizers and anti-androgens in young girls with ovarian androgen excess and without pregnancy risk, on markers of cardiometabolic health
Uncertain — At least one provider returned uncertain or parent-category.
- isrctn·ISRCTN04503926·No longer recruiting·Effect of valsartan on endothelial function, carotid intima-media thickness, left ventricular mass, arterial compliance, inflammation and coagulation abnormalities in the metabolic syndrome
Uncertain — At least one provider returned uncertain or parent-category.
Where to find support
Condition-specific patient organisations, when Orphanet lists them, are on the disease’s Orphanet page. We also link umbrella groups that support undiagnosed and ultra-rare families.
Orphanet entry for Carotid web — check Associations / patient organisations on that page.
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.
"Carotid web" OR "Atypical FMD" OR "Atypical fibromuscular dysplasia" OR "Carotid diaphragm"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Carotid web" OR "Atypical FMD" OR "Atypical fibromuscular dysplasia" OR "Carotid diaphragm"
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: 1 interventional · 5 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: AFMD; CaW
Confidence reasoning
- Preferred label is short or not clearly distinctive
- 2 synonym(s) dropped by stoplist (may under-count)
- No label/synonym collisions with other diseases in this corpus
- No Orphanet definition and no Mondo IDs — likely taxonomy scaffolding
Ingested 2026-07-26T01:37:55.506Z