Skip to content
EvidenceHelixEvidenceLib · Scientific Encyclopedia
⌘ K

Scientific library

EvidenceLib encyclopediaAll articles A–Z2,100Open textbooks2Cancer study catalog458How it is made

My workspace this browser

Saved pages0Notes & annotations0

Recently viewed

Explore by field

Cancer and Oncology107Genetics and Genomics95Neuroscience110Cardiovascular Medicine105Immunology90Pharmacology99Molecular Biology100Infectious Diseases102Rare and Inherited Diseases106Clinical Research98Anatomy and Physiology542Drugs and Chemicals546
Plans & pricingCompare EvidenceHelix workspace plans
Library›EvidenceLib›Rare and Inherited Diseases›Encephalocele
Explore more with EvidenceHelix Workspace

Compare studies, analyze evidence and create research reports with premium tools.

Explore Researcher plans

Research reading room

Encephalocele

Rare and Inherited Diseases · NLM MeSH · updated 2026-10-29 · version 1

Citations verified against PubMedNot yet clinician-reviewed10 referencesApproximately 5 min read

Brain tissue herniation through a congenital or acquired defect in the skull.

Table of Contents

1. Definition2. Research landscape3. Reading the evidence4. Open-access studies5. Key reviews6. References7. About this article

Definition and research guide

This page combines a MeSH definition, publication statistics and selected research abstracts. It is a starting point for reading the literature, not a medical textbook or a systematic evidence review.

Content available: 4 complete abstracts (953 words), 10 references. Full article text is not stored or reproduced here; follow the PMID, DOI or PMC links to read the original sources and their access terms.

Definition

Brain tissue herniation through a congenital or acquired defect in the skull. The majority of congenital encephaloceles occur in the occipital or frontal regions. Clinical features include a protuberant mass that may be pulsatile. The quantity and location of protruding neural tissue determines the type and degree of neurologic deficit. Visual defects, psychomotor developmental delay, and persistent motor deficits frequently occur.

Definition: NLM Medical Subject Headings (MeSH) scope note (Public domain (U.S. National Library of Medicine); attribution requested). View the MeSH record.

Also known as: Encephaloceles; Cephalocele; Cephaloceles; Cranial Meningoencephalocele; Cranial Meningoencephaloceles; Meningoencephalocele, Cranial; Meningoencephaloceles, Cranial; Bifid Cranium.

Where it fits in the MeSH classification

Broader topics
Neural Tube Defects; Hernia

Research landscape

PubMed indexes 4,191 records tagged with the MeSH heading “Encephalocele” (counts retrieved 2026-10-29). 526 of them (12.6%) were published from 2020 onward, and the busiest period so far is through 1999 with 1,903 records.

Reviews account for 385 records (9.2%) and meta-analyses for 8. Randomized controlled trials number 9 (0.2%) as a share of all records on the topic. Randomized trials make up only a small share of this literature, so much of what is known comes from laboratory, observational or descriptive work.

PubMed records by publication periodthrough 1999: 1,903 records; 2000-2009: 777 records; 2010-2019: 985 records; 2020 onward: 526 records1,903through 19997772000-20099852010-20195262020 onward
Records in PubMed indexed with this heading, by publication period. Real counts from NCBI E-utilities; the final period covers only part of the current year. Volume reflects how much has been published, not how strong the evidence is.
Show the data
PeriodRecords
through 19991,903
2000-2009777
2010-2019985
2020 onward526
Share of records by publication typeReviews: 9.2 percent; Meta-analyses: 0.2 percent; Randomized controlled trials: 0.2 percentReviews9.2% (385)Meta-analyses0.2% (8)Randomized controlled trials0.2% (9)
Share of all PubMed records on this heading that carry each publication type. Types overlap with other records, so the shares do not sum to 100%.
Publication-type chart data
Publication types among 4,191 PubMed records
TypeRecordsShare
Reviews3859.2%
Meta-analyses80.2%
Randomized controlled trials90.2%

Method: PubMed query "Encephalocele"[MeSH Terms] with publication-type and date filters, retrieved 2026-10-29.

Reading the evidence in rare and inherited diseases

Rare conditions are difficult to study: few patients means small studies, case reports and registries are common, and randomized trials are the exception. Small samples limit precision and can exaggerate effects, and cases reported in the literature may be the most severe or unusual. Evidence from many small studies is best read together. Check how patients were identified, how many were included and how long they were followed.

Evidence from open-access studies

These open-access studies come from PubMed’s best-match results for this heading (papers whose main topic it is), ranked here by citation count, with one recent addition. Each abstract is reproduced in full under its recorded open licence so that you can read the authors’ own words. They illustrate the literature; they are not a systematic summary of it. Citation counts measure attention, not reliability or clinical benefit.

Study comparison — selected abstracts, not a systematic review
Study / authorsYearSource label / designEurope PMC citationsLicence / source
Characterizing the morbid genome of ciliopathies
Shaheen R, Szymanska K, Basu B, Patel N, Ewida N, Faqeih E, et al.
2016Research article
Design not recorded in structured metadata
145cc by
PMID 27894351 · DOI · PMC5126998
Whole exome sequencing identified a homozygous novel variant in CEP290 gene causes Meckel syndrome
Zhang R, Chen S, Han P, Chen F, Kuang S, Meng Z, et al.
2020Research article
Design not recorded in structured metadata
78cc by
PMID 31840411 · DOI · PMC6991682
The Ciliopathy Protein CC2D2A Associates with NINL and Functions in RAB8-MICAL3-Regulated Vesicle Trafficking
Bachmann-Gagescu R, Dona M, Hetterschijt L, Tonnaer E, Peters T, de Vrieze E, et al.
2015Research article
Design not recorded in structured metadata
75cc by
PMID 26485645 · DOI · PMC4617701
Brain herniation into arachnoid granulations: an underrecognized posterior fossa finding
Ozer G, Ekinci HI, Kavak RP
2025Research article
Design not recorded in structured metadata
2cc by
PMID 40627191 · DOI · PMC12743093

Characterizing the morbid genome of ciliopathies [1]

Research article Shaheen R, Szymanska K, Basu B, Patel N, Ewida N, Faqeih E, et al. · · 2016 · cited 145 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
BackgroundCiliopathies are clinically diverse disorders of the primary cilium.
Closing excerpt
We also provide the strongest evidence, to date, in support of the classical Mendelian inheritance of Bardet-Biedl syndrome and other ciliopathies.
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (239 words)

BackgroundCiliopathies are clinically diverse disorders of the primary cilium. Remarkable progress has been made in understanding the molecular basis of these genetically heterogeneous conditions; however, our knowledge of their morbid genome, pleiotropy, and variable expressivity remains incomplete.ResultsWe applied genomic approaches on a large patient cohort of 371 affected individuals from 265 families, with phenotypes that span the entire ciliopathy spectrum. Likely causal mutations in previously described ciliopathy genes were identified in 85% (225/265) of the families, adding 32 novel alleles. Consistent with a fully penetrant model for these genes, we found no significant difference in their "mutation load" beyond the causal variants between our ciliopathy cohort and a control non-ciliopathy cohort. Genomic analysis of our cohort further identified mutations in a novel morbid gene TXNDC15, encoding a thiol isomerase, based on independent loss of function mutations in individuals with a consistent ciliopathy phenotype (Meckel-Gruber syndrome) and a functional effect of its deficiency on ciliary signaling. Our study also highlighted seven novel candidate genes (TRAPPC3, EXOC3L2, FAM98C, C17orf61, LRRCC1, NEK4, and CELSR2) some of which have established links to ciliogenesis. Finally, we show that the morbid genome of ciliopathies encompasses many founder mutations, the combined carrier frequency of which accounts for a high disease burden in the study population.ConclusionsOur study increases our understanding of the morbid genome of ciliopathies. We also provide the strongest evidence, to date, in support of the classical Mendelian inheritance of Bardet-Biedl syndrome and other ciliopathies.

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 27894351 · DOI · PMC5126998

Whole exome sequencing identified a homozygous novel variant in CEP290 gene causes Meckel syndrome [2]

Research article Zhang R, Chen S, Han P, Chen F, Kuang S, Meng Z, et al. · · 2020 · cited 78 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
Meckel syndrome (MKS) is a pre- or perinatal multisystemic ciliopathic lethal disorder with an autosomal recessive mode of inheritance.
Closing excerpt
Our present study reported the first variant of CEP290 associated with MKS4 in Chinese population.
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (250 words)

Meckel syndrome (MKS) is a pre- or perinatal multisystemic ciliopathic lethal disorder with an autosomal recessive mode of inheritance. Meckel syndrome is usually manifested with meningo-occipital encephalocele, polycystic kidney dysplasia, postaxial polydactyly and hepatobiliary ductal plate malformation. Germline variants in CEP290 cause MKS4. In this study, we investigated a 35-years-old Chinese female who was 17+1 weeks pregnant. She had a history of adverse pregnancy of having foetus with multiple malformations. We performed ultrasonography and identified the foetus with occipital meningoencephalocele and enlarged cystic dysplastic kidneys. So, she decided to terminate her pregnancy and further genetic molecular analysis was performed. We identified the aborted foetus without postaxial polydactyly. Histological examination of foetal kidney showed cysts in kidney and thinning of the renal cortex with glomerular atrophy. Whole exome sequencing identified a novel homozygous variant (c.2144T>G; p.L715* ) in exon 21 of the CEP290 in the foetus. Sanger sequencing confirmed that both the parents of the foetus were carrying this variant in a heterozygous state. This variant was not identified in two elder sisters of the foetus as well as in the 100 healthy individuals. Western blot analysis showed that this variant leads to the formation of truncated CEP290 protein with the molecular weight of 84 KD compared with the wild-type CEP290 protein of 290 KD. Hence, it is a loss-of-function variant. We also found that the mutant cilium appears longer in length than the wild-type cilium. Our present study reported the first variant of CEP290 associated with MKS4 in Chinese population.

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 31840411 · DOI · PMC6991682

The Ciliopathy Protein CC2D2A Associates with NINL and Functions in RAB8-MICAL3-Regulated Vesicle Trafficking [3]

Research article Bachmann-Gagescu R, Dona M, Hetterschijt L, Tonnaer E, Peters T, de Vrieze E, et al. · · 2015 · cited 75 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
Ciliopathies are a group of human disorders caused by dysfunction of primary cilia, ubiquitous microtubule-based organelles involved in transduction of extra-cellular signals to the cell.
Closing excerpt
Together, these data support a model where CC2D2A associates with NINL to provide a docking point for cilia-directed cargo vesicles, suggesting a mechanism by which transition zone proteins can control the protein content of the ciliary compartment.
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (289 words)

Ciliopathies are a group of human disorders caused by dysfunction of primary cilia, ubiquitous microtubule-based organelles involved in transduction of extra-cellular signals to the cell. This function requires the concentration of receptors and channels in the ciliary membrane, which is achieved by complex trafficking mechanisms, in part controlled by the small GTPase RAB8, and by sorting at the transition zone located at the entrance of the ciliary compartment. Mutations in the transition zone gene CC2D2A cause the related Joubert and Meckel syndromes, two typical ciliopathies characterized by central nervous system malformations, and result in loss of ciliary localization of multiple proteins in various models. The precise mechanisms by which CC2D2A and other transition zone proteins control protein entrance into the cilium and how they are linked to vesicular trafficking of incoming cargo remain largely unknown. In this work, we identify the centrosomal protein NINL as a physical interaction partner of CC2D2A. NINL partially co-localizes with CC2D2A at the base of cilia and ninl knockdown in zebrafish leads to photoreceptor outer segment loss, mislocalization of opsins and vesicle accumulation, similar to cc2d2a-/- phenotypes. Moreover, partial ninl knockdown in cc2d2a-/- embryos enhances the retinal phenotype of the mutants, indicating a genetic interaction in vivo, for which an illustration is found in patients from a Joubert Syndrome cohort. Similar to zebrafish cc2d2a mutants, ninl morphants display altered Rab8a localization. Further exploration of the NINL-associated interactome identifies MICAL3, a protein known to interact with Rab8 and to play an important role in vesicle docking and fusion. Together, these data support a model where CC2D2A associates with NINL to provide a docking point for cilia-directed cargo vesicles, suggesting a mechanism by which transition zone proteins can control the protein content of the ciliary compartment.

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 26485645 · DOI · PMC4617701

Brain herniation into arachnoid granulations: an underrecognized posterior fossa finding [4]

Research article Ozer G, Ekinci HI, Kavak RP · · 2025 · cited 2 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
PURPOSE: To evaluate the prevalence, imaging characteristics, and associated findings of brain herniation into arachnoid granulations (BHAG) using the 3D driven equilibrium (DRIVE) sequence on a 3T MRI system.
Closing excerpt
3D-DRIVE sequence has a higher sensitivity, particularly with the high-field imaging systems, in the detection of BHAG.
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (175 words)

PURPOSE: To evaluate the prevalence, imaging characteristics, and associated findings of brain herniation into arachnoid granulations (BHAG) using the 3D driven equilibrium (DRIVE) sequence on a 3T MRI system. MATERIALS AND METHODS: This retrospective study included 695 patients who underwent temporal MRI between January and May 2024. Imaging findings were reviewed by two experienced radiologists. BHAG prevalence, locations, associated parenchymal damage (gliosis/encephalomalacia), and detectability with conventional MRI sequences were assessed. Demographic data and clinical information were also recorded. RESULTS: BHAG was identified in 7.3% of cases (51/695) in the posterior fossa. Patients with BHAG were older than those without (p=0.003), with no gender preference (p=0.259). Cerebellar herniations were most frequent (47.1%), followed by temporal (45.1%) and occipital lobe herniations (17.6%). Parenchymal damage was observed in 25.5% of patients with BHAG. BHAG was undetectable with conventional MRI sequences in 40% of cases. CONCLUSION: BHAG is a common incidental finding in brain MRI and presumably not associated with any symptoms. 3D-DRIVE sequence has a higher sensitivity, particularly with the high-field imaging systems, in the detection of BHAG.

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 40627191 · DOI · PMC12743093

Key reviews and meta-analyses

The most cited review-type papers among PubMed’s best-match results for this heading, listed with bibliographic details only. Follow the links for the full text and access terms.

  • Research article The pediatric Chiari I malformation: a review [5]
    Tubbs RS, Lyerly MJ, Loukas M, Shoja MM, Oakes WJ · Childs Nerv Syst · 2007 · cited 144 times (Europe PMC)
  • Research article Sinking skin flaps, paradoxical herniation, and external brain tamponade: a review of decompressive craniectomy management [6]
    Akins PT, Guppy KH · Neurocrit Care · 2008 · cited 117 times (Europe PMC)
  • Research article Collagen XVIII in tissue homeostasis and dysregulation - Lessons learned from model organisms and human patients [7]
    Heljasvaara R, Aikio M, Ruotsalainen H, Pihlajaniemi T · Matrix Biol · 2017 · cited 111 times (Europe PMC)
  • Research article Spontaneous CSF Leaks [8]
    Wang EW, Vandergrift WA, Schlosser RJ · Otolaryngol Clin North Am · 2011 · cited 94 times (Europe PMC)
  • Research article Lumbar puncture and the risk of herniation: when should we first perform CT? [9]
    van Crevel H, Hijdra A, de Gans J · J Neurol · 2002 · cited 92 times (Europe PMC)
  • Research article DIAGNOSIS OF ENDOCRINE DISEASE: Primary empty sella: a comprehensive review [10]
    Chiloiro S, Giampietro A, Bianchi A, Tartaglione T, Capobianco A, Anile C, et al. · Eur J Endocrinol · 2017 · cited 90 times (Europe PMC)

References

  1. Shaheen R, Szymanska K, Basu B, Patel N, Ewida N, Faqeih E, et al.. Characterizing the morbid genome of ciliopathies. . 2016. PMID 27894351 · DOI · PMC5126998
  2. Zhang R, Chen S, Han P, Chen F, Kuang S, Meng Z, et al.. Whole exome sequencing identified a homozygous novel variant in CEP290 gene causes Meckel syndrome. . 2020. PMID 31840411 · DOI · PMC6991682
  3. Bachmann-Gagescu R, Dona M, Hetterschijt L, Tonnaer E, Peters T, de Vrieze E, et al.. The Ciliopathy Protein CC2D2A Associates with NINL and Functions in RAB8-MICAL3-Regulated Vesicle Trafficking. . 2015. PMID 26485645 · DOI · PMC4617701
  4. Ozer G, Ekinci HI, Kavak RP. Brain herniation into arachnoid granulations: an underrecognized posterior fossa finding. . 2025. PMID 40627191 · DOI · PMC12743093
  5. Tubbs RS, Lyerly MJ, Loukas M, Shoja MM, Oakes WJ. The pediatric Chiari I malformation: a review. Childs Nerv Syst. 2007. PMID 17639419 · DOI
  6. Akins PT, Guppy KH. Sinking skin flaps, paradoxical herniation, and external brain tamponade: a review of decompressive craniectomy management. Neurocrit Care. 2008. PMID 18064408 · DOI
  7. Heljasvaara R, Aikio M, Ruotsalainen H, Pihlajaniemi T. Collagen XVIII in tissue homeostasis and dysregulation - Lessons learned from model organisms and human patients. Matrix Biol. 2017. PMID 27746220 · DOI
  8. Wang EW, Vandergrift WA, Schlosser RJ. Spontaneous CSF Leaks. Otolaryngol Clin North Am. 2011. PMID 21819875 · DOI
  9. van Crevel H, Hijdra A, de Gans J. Lumbar puncture and the risk of herniation: when should we first perform CT?. J Neurol. 2002. PMID 11985377 · DOI
  10. Chiloiro S, Giampietro A, Bianchi A, Tartaglione T, Capobianco A, Anile C, et al.. DIAGNOSIS OF ENDOCRINE DISEASE: Primary empty sella: a comprehensive review. Eur J Endocrinol. 2017. PMID 28780516 · DOI

About this article

Sources
NLM Medical Subject Headings (definition, synonyms); NCBI PubMed (counts, identifiers); Europe PMC (open-access abstracts and citation counts).
Verification
Every reference was resolved against PubMed on 2026-10-31; title, year and DOI matched.
Review state
automated source verified; no human expert review has been recorded yet.
Version
1, last updated 2026-10-29.

See how EvidenceLib is built. Spotted an error? Email support@evidencehelix.com.

Evidence strength

EvidenceHelix's computed view of the study designs behind this topic: how common meta-analyses, randomized trials and reviews are, how recent the literature is, and a plain-language reading. It describes the design mix of the literature. It is not a quality appraisal of any study, and it is not medical advice.

Included with the Researcher plan

Reading every article stays free. This computed view is part of the paid plans.

See plans Sign in

Your notes

Notes and highlights stay in this browser only; they are not sent to EvidenceHelix.

Related research topics

  • MeningoceleRare and Inherited Diseases
  • AnencephalyRare and Inherited Diseases
  • Neural Tube DefectsRare and Inherited Diseases
  • Arachnoid CystsRare and Inherited Diseases
  • Charcot-Marie-Tooth DiseaseRare and Inherited Diseases
  • GastroschisisRare and Inherited Diseases

All 106 articles in Rare and Inherited Diseases →

At a glance

4,191
PubMed records on this heading
13%
published since 2020
385
review articles
9
randomized trials
10
verified references below

Counts come from PubMed on 2026-10-29; they show how much has been written, not how strong the evidence is.

Related topics See all →

  • MeningoceleRare and Inherited Diseases
  • AnencephalyRare and Inherited Diseases
  • Neural Tube DefectsRare and Inherited Diseases
  • Arachnoid CystsRare and Inherited Diseases
  • Charcot-Marie-Tooth DiseaseRare and Inherited Diseases

My notes & annotations (0)

Nothing yet. Select text and press Highlight, or write a note in the Notes tab. Stored in this browser only.

Sources

  • NLM MeSH record ↗
  • PubMed search used ↗

EvidenceLib is a research-education resource, not medical advice. It does not diagnose, prescribe or recommend starting, stopping or changing any treatment. Talk to a qualified clinician about your own situation. Methods, sources and licences · Legal · Support