ORPHA:698260
Carotid web
Also known as: AFMD · Atypical FMD · Atypical fibromuscular dysplasia · CaW · Carotid diaphragm
How rare: How common this is has not been clearly measured.
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=183) is 38.
453 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).
425 in the last 10 years · low confidence
Is a treatment being tested?
1
trials for this specific condition
1 interventional trial matched this specific condition name; 1 currently recruiting in our sample.
Data as of 26 July 2026
1 interventional trial — more than 59.2% of diseases in the trials denominator have none at all (151 of 255; this disease is at the 65.3th percentile).
low confidence · 65.3th 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?
1,083
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
Recruiting interventional trials
Trials testing a treatment from the matched ClinicalTrials.gov set
1 interventional trials matched after quoted-phrase search and title/condition post-filter.
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
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.
"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.
0Query 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