ORPHA:268820
Cranial meningocele
Clinical definition (Orphanet)
A rare central nervous system characterized by herniation of meninges through a permanent defect in the skull. It is lined by arachnoid and contains cerebrospinal fluid, but no brain tissue. Signs and symptoms depend on the location of the lesion and are related to mass effect, skull deformities, or leaking of cerebrospinal fluid.
How rare: How common this is has not been clearly measured.
Is anyone studying this?
1,316
1,316 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=183) is 38.
1,316 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).
684 in the last 10 years · low confidence
Is a treatment being tested?
0
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). 2 trials are registered for meningocele, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 26 July 2026
2
trials for meningocele, the broader category this belongs to
Trials registered for a broader category may or may not enrol people with this specific subtype — eligibility criteria vary, and the trial record often doesn't say. Worth raising with a clinician. How we count trials.
No matched interventional trials. This is true for 59.2% of diseases in the trials denominator (151 of 255). Here are the researchers publishing on it.
low confidence · 29.6th 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?
1,099
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.
- 01Liu L5 papers · 2026
Department of Neurosurgery, Affiliated Hospital of Southwest Medical University, Xianglin Road, Luzhou, 646000, Sichuan, China. liulst@163.com.
Papers in Europe PMC - 02
- 03Anand VK3 papers · 2024
4Otolaryngology Head and Neck Surgery, NewYork-Presbyterian/Weill Cornell Medicine, New York, New York.
Papers in Europe PMC - 04Tabaee A3 papers · 2024
4Otolaryngology Head and Neck Surgery, NewYork-Presbyterian/Weill Cornell Medicine, New York, New York.
Papers in Europe PMC - 05Ashurst J2 papers · 2026
Arizona College of Osteopathic Medicine, Midwestern University, Glendale, Arizona.
Papers in Europe PMC - 06Barnett-Trapp D2 papers · 2026
Arizona College of Osteopathic Medicine, Midwestern University, Glendale, Arizona.
Papers in Europe PMC - 07Cao J2 papers · 2024
Department of Otolaryngology-Head and Neck Surgery, Yantai Yuhuangding Hospital, Qingdao University, Yantai, 264000, China.
Papers in Europe PMC - 08Cui SJ2 papers · 2026
Department of Otorhinolaryngology Head and Neck Surgery, Beijing Tongren Hospital, Capital Medical University, Beijing100730, China.
Papers in Europe PMC - 09Dallan I2 papers · 2025
Department of Otolaryngology, Head and Neck Surgery, Pisa University Hospital, Pisa, Italy.
Papers in Europe PMC - 10De Decker S2 papers · 2021
Department of Clinical Science and Services, Royal Veterinary College, University of London, Hawkshead lane, North Mymms, Hatfield, AL9 7TA, UK.
Papers in Europe PMC
Recruiting interventional trials
Trials testing a treatment from the matched ClinicalTrials.gov set
No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.
2 interventional trials matched meningocele, the broader category — see the summary above. Those studies are not counted in the condition-specific total.
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.
"Cranial meningocele" OR "brain meninx cephalocele (disease)" OR "cephalocele (disease) of brain meninx" OR "meningoencephalocele"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Cranial meningocele" OR "brain meninx cephalocele (disease)" OR "cephalocele (disease) of brain meninx" OR "cephalocele (disease) of the brain meninx" OR "meningoencephalocele"
Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Cross-references (from Mondo): UMLS:C0266456 NCIT:C124517
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 (1316) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity