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Condition (MeSH)

Craniosynostoses

ClinicalTrials.gov lists 81 trials for Craniosynostoses or a narrower condition beneath it. Incyte Corporation has the most among industry and government lead sponsors, with 7.

MeSH D003398 Musculoskeletal Diseases C05 C16 Listed by Orphanet as a rare disease
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Phase 1 Phase 1 9 Phase 1/2 Phase 1/2 3 Phase 2 Phase 2 15 Phase 3 Phase 3 2 Phase 4 Phase 4 2 Not applicable Not applicable 20 Observational Observational 30 Phase 1 Phase 1 9 Phase 1/2 Phase 1/2 3 Phase 2 Phase 2 15 Phase 3 Phase 3 2 Phase 4 Phase 4 2 Not applicable Not applicable 20 Observational Observational 30

Trials per phase

49 of the 81 trials are tagged with Craniosynostoses itself; the rest are tagged with a narrower condition beneath it.

Get the Craniosynostoses report as a PDF

The PDF carries up to 50 rows of each section, where the page shows the first few, with the sources listed. Enter a work email and confirm it from the message we send, and the report follows by email.

When did Craniosynostoses trials start? (22)

Shown in this order: most recent first, 1990 onwards. 2026 is partial: trials registered with a 2026 start date so far, not a full year.

Trials over time, by phase

  • Phase 1
  • Phase 1/2
  • Phase 2
  • Phase 3
  • Phase 4
  • Not applicable
  • Observational

Top of scale: 12

2001: 1 trials (Observational 1) 2003: 1 trials (Not applicable 1) 2005: 4 trials (Observational 4) 2008: 3 trials (Observational 1, Not applicable 1, Phase 4 1) 2009: 1 trials (Phase 1 1) 2010: 3 trials (Observational 1, Not applicable 1, Phase 3 1) 2011: 1 trials (Phase 2 1) 2012: 2 trials (Observational 1, Phase 1 1) 2013: 3 trials (Not applicable 2, Phase 1 1) 2014: 3 trials (Observational 1, Phase 4 1, Phase 2 1) 2015: 1 trials (Observational 1) 2016: 3 trials (Observational 1, Not applicable 1, Phase 2 1) 2017: 6 trials (Not applicable 1, Phase 2 3, Phase 1 2) 2018: 2 trials (Observational 1, Phase 2 1) 2019: 8 trials (Observational 3, Not applicable 1, Phase 2 3, Phase 1/2 1) 2020: 12 trials (Observational 3, Not applicable 4, Phase 2 3, Phase 1/2 1, Phase 1 1) 2021: 4 trials (Observational 1, Not applicable 1, Phase 2 1, Phase 1 1) 2022: 5 trials (Observational 2, Not applicable 2, Phase 2 1) 2023: 4 trials (Observational 1, Not applicable 1, Phase 1 2) 2024: 5 trials (Observational 3, Not applicable 2) 2025: 4 trials (Observational 3, Phase 1/2 1)

Trials registered with a start date in each year, 1990 onward, stacked by phase (complete years only; the current partial year is in the table's notes). The table below lists the same counts, most recent years first.

Trials started per year
Year Trials started
2026 (partial year) 5
2025 4
2024 5
2023 4
2022 5
2021 4
2020 12
2019 8
2018 2
2017 6

No forecast is made for this condition: it averages 4.6 trial starts a year over the five years to September, under the 5 a year the method needs.

Prediction, not a registry value: median of 36 months from start to primary completion across 5 trials still running at the 2026-10-09 snapshot; registered median of 35 months across 44 trials with a primary completion typed Actual. Source: ClinicalTrials.gov / AACT (CTTI), public domain.

What phase are Craniosynostoses trials in? (7)

Shown in this order: phase order.

Show the trials by phase as a table
Trials by phase
Phase Trials
Phase 1 9
Phase 1/2 3
Phase 2 15
Phase 3 2
Phase 4 2
Not applicable 20
Observational 30

How many Craniosynostoses trials are recruiting? (9)

Shown in this order: the order a trial moves through, from not yet recruiting to unknown.

Trials by recruitment status
Status Trials
Not yet recruiting 7
Recruiting 11
Enrolling by invitation 1
Active, not recruiting 5
Completed 33

Status as registered on ClinicalTrials.gov. Each trial is counted once.

Which lead sponsors run the most Craniosynostoses trials? (6)

Shown in this order: most trials first. Lead sponsors the registry classes as industry, NIH, US federal, other government or network. A hospital or university the registry files as government can appear here. Sponsors it classes as academic or other are shown on the full page, because that class cannot separate an institution from a named investigator.

Lead sponsors
Sponsor Trials
Incyte Corporation 7
National Human Genome Research Institute (NHGRI) 4
Janssen Research & Development, LLC 3
Basilea Pharmaceutica 2
Eisai Co., Ltd. 2

Which drugs are being tested for Craniosynostoses? (5)

Shown in this order: most trials first. One row per drug, matched to a single molecule under all its names, ranked by number of trials.

Drugs tested
Drug Trials
Infigratinib 3
E7090 3
Rogaratinib 2
PEMBROLIZUMAB 2
Aminocaproic Acid 2

Interventions as named in the registry (10)

Shown in this order: most trials first.

Interventions as named in the registry
Drug Trials
Pemigatinib Pill 6
acid tranexamic 3
Gemcitabine/Gemzar 2
Phase 1 Part B - dose expansion TYRA-200 taken once daily by mouth in 28-day cycles 1
Derazantinib 200 mg once daily + atezolizumab 1200 mg 1

These are the names sponsors entered on ClinicalTrials.gov that we have not matched to a single molecule. Some are drugs under a brand or code name; others are procedures, doses or arm labels.

Which serious adverse events do Craniosynostoses trials report? (10)

Shown in this order: most subjects affected first. Subjects affected summed across trials, a cross-trial signal, not a rate.

Serious adverse events in this condition's trials
Adverse event Subjects affected Trials
Disease progression 35 3
Abdominal pain 27 5
Urinary tract infection 27 4
Acute kidney injury 20 4
General physical health deterioration 20 3

Which publications cover Craniosynostoses? (110)

Shown in this order: major-topic papers first, then newest, then most linked to trials.

Prevalence (15)

Shown in this order: jurisdiction, then disease name. Orphanet observation for the mapped ORPHA concept; the mapping relation column says whether that concept is exactly this condition or broader or narrower.

Prevalence
Orphanet disease Type Class Geography Jurisdiction Mapping relation
Craniosynostosis Prevalence at birth 1-5 / 10 000 United States US Unspecified
Craniosynostosis Prevalence at birth 1-5 / 10 000 United States US Exact
Craniosynostosis Prevalence at birth 1-5 / 10 000 United States US Exact
Craniosynostosis Prevalence at birth 1-5 / 10 000 Europe Not stated Exact
Craniosynostosis Prevalence at birth 1-5 / 10 000 Australia Not stated Unspecified

Rare-disease identity (2)

Shown in this order: exact, broader, narrower, other.

Rare-disease identity
Orphanet disease ORPHA code Relation Source
Craniosynostosis 1531 Exact Orphanet Rare Disease Ontology (ORDO)
Craniosynostosis 1531 Exact Orphadata Science knowledge files, Product 1

Sub-conditions in MeSH (1)

MeSH descendants one level down with at least one trial, most trials first.

Not on this page

Not measured: delivery record.

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