ORPHA:620102
Non-syndromic unicoronal craniosynostosis
Also known as: Isolated frontal plagiocephaly · Isolated unicoronal craniosynostosis · Non-syndromic anterior synostotic plagiocephaly · Non-syndromic frontoparietal craniosynostosis · Non-syndromic hemicoronal craniosynostosis · Non-syndromic unilateral coronal synostosis
Publications
15
29.7th percentile
Trials
0
Interventional, condition-specific
Researchers
78
Distinct authors in sample
Gene link
—
Readiness
2/6
Stages with a signal
Clinical definition (Orphanet)
A form of non-syndromic unisutural craniosynostosis characterized by the premature fusion of one of the two coronal sutures of the newborn, leading to plagiocephaly with flattening of the ipsilateral side of the forehead and a compensatory bulging of the contralateral side. Ocular anomalies (strabismus, hypermetropia, astigmatism) due to orbital dystopia, and ocular torticollis, are commonly associated with in unicoronal craniosynostosis.
How rare: 1-9 / 1 000 000 — roughly one to nine people per million. In a city the size of Kolkata, perhaps a few dozen.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0850073
- UMLS:C5680401
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
No specific-condition interventional trial, but broader-category trials exist — discuss eligibility with a clinician.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
15 matched papers (12 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 trialPartial
None under the specific name; 16 for broader category craniosynostosis
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?
15
15 papers have ever been indexed 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=5449) is 41.
15 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).
12 in the last 10 years · high confidence · 29.7th percentile (publications denominator)
Phrase hits: 15 · MeSH hits: 0
Who's working on it?
78
Distinct author names in 15 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.
- 01Dahl J2 papers · 2017
Department of Surgery, Division of Otolaryngology, Seattle Children's Hospital, Seattle, Washington, USA.
Papers in Europe PMC - 02Esser YS2 papers · 2023
Department of Plastic and Reconstructive Surgery, Erasmus MC, University Medical Center, 3000 CA Rotterdam, The Netherlands.
Papers in Europe PMC - 03Loudon SE2 papers · 2023
Department of Ophthalmology, Erasmus MC, University Medical Center, 3000 CA Rotterdam, The Netherlands.
Papers in Europe PMC - 04Pleumeekers MM2 papers · 2023
Department of Plastic and Reconstructive Surgery, Erasmus MC, University Medical Center, 3000 CA Rotterdam, The Netherlands.
Papers in Europe PMC - 05Rostamzad P2 papers · 2023
Department of Plastic and Reconstructive Surgery, Erasmus MC, University Medical Center, 3000 CA Rotterdam, The Netherlands.
Papers in Europe PMC - 06Tan ETC2 papers · 2023
Department of Ophthalmology, Erasmus MC, University Medical Center, 3000 CA Rotterdam, The Netherlands.
Papers in Europe PMC - 07Ting K2 papers · 2018
Los Angeles, Calif.; Baltimore, Md.; Pangyo, Seongnam, Republic of Korea; and Shenyang, People's Republic of China.
Papers in Europe PMC - 08Aalbers M1 paper · 2026
Department of Pediatric Neurosurgery, Radboud University Medical Center Nijmegen, Nijmegen, the Netherlands.
Papers in Europe PMC - 09Ali A1 paper · 2013
Department of Pediatric Surgery, All India Institute of Medical Sciences, New Delhi, India.
Papers in Europe PMC - 10Bajpai M1 paper · 2013
Department of Pediatric Surgery, All India Institute of Medical Sciences, New Delhi, India.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
0
interventional 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). 16 trials are registered for craniosynostosis, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 27 July 2026
No matched interventional trials. This is true for 73% of diseases in the trials denominator (5114 of 7003). Here are the researchers publishing on it.
high confidence · 36.5th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.
16 interventional trials matched craniosynostosis, the broader category — listed below. Those studies are not counted in the condition-specific total.
Broader category: craniosynostosis
16
Interventional trials for the parent category, exclusive of NCT IDs already counted above. Eligibility for this subtype is not guaranteed.
Worth raising with a clinician. How we count trials.
Recruiting under the broader category
- NCT07080528·ENROLLING BY INVITATION·Measuring of the Duration of Action of Different Doses of Rocuronium-induced Neuromuscular Block in Infants During Surgical Treatment of Craniosynostosis
Conditions: Neuromuscular Blocking Agents · Residual Neuromuscular Block · Neuromuscular Blockade Monitoring·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.
"Non-syndromic unicoronal craniosynostosis" OR "Isolated frontal plagiocephaly" OR "Isolated unicoronal craniosynostosis" OR "Non-syndromic anterior synostotic plagiocephaly" OR "Non-syndromic frontoparietal craniosynostosis" OR "Non-syndromic hemicoronal craniosynostosis" OR "Non-syndromic unilateral coronal synostosis"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Non-syndromic unicoronal craniosynostosis" OR "Isolated frontal plagiocephaly" OR "Isolated unicoronal craniosynostosis" OR "Non-syndromic anterior synostotic plagiocephaly" OR "Non-syndromic frontoparietal craniosynostosis" OR "Non-syndromic hemicoronal craniosynostosis" OR "Non-syndromic unilateral coronal synostosis"
Study-type breakdown: 0 interventional · 0 observational · 0 expanded access. Only interventional studies enter the trial headline.
Parent-category trials query:
"craniosynostosis"
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
Ingested 2026-07-27T19:08:09.865Z