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More info
You can access this
clinical trial
if you have
Craniosynostosis
and you are
under 80
years old
-
This is an observational trial.
You are contributing to medical knowledge about your condition.
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The purpose

Craniosynostosis (CS) is a common malformation occurring in ~4 per 10,000 live births in which the sutures between skull bones close too early, causing long-term problems with brain and skull growth. Infants with CS typically require extensive surgical treatment and may experience many perioperative complications, including hemorrhage and re-synostosis. Even with successful surgery, children can experience developmental and learning disabilities or vision problems. Most often, CS appears as isolated nonsyndromic CS (NSC). Of the several subtypes of CS, unilateral or bilateral fusion of the coronal suture is the second most common form of CS accounting for 20-30% of all NSC cases. The etiology of coronal NSC (cNSC) is not well understood, although the published literature suggests that it is a multifactorial condition. About 5-14% of coronal craniosynostosis patients have a positive family history, with a specific genetic etiology identified in >25% of cNSC cases, suggesting a strong genetic component in the pathogenesis of this birth defect. The causes for cNSC and its phenotypic heterogeneity remain largely unknown. An international team of investigators will generate large genomic and gene expression datasets on samples from patients with cNSC. State-of-the-art imaging, genetic, and developmental and systems biology approaches will be used to quantitatively model novel pathways and networks involved in the development of cNSC. Novel variant-, gene- and network-level analyses will be performed on the genomic data obtained from cNSC cases, their relatives, and controls to identify novel variants and genetic regions associated with cNCS. Quantitative, analytical, and functional validations of these predictions will provide insights into the etiology and possible therapeutic targets for CS and potentially other bone-related disorders.

Provided treatments

  • Other: Craniosynostosis Network Environmental Survey
  • Other: 2D/3D Photography
  • Procedure: Buccal Swab Cell Sampling
  • Procedure: Blood sampling
  • Procedure: Skin Biopsy
  • Procedure: Tissues from a Clinically Indicated Procedure
  • Procedure: Pre-operative CT Scan Image Files.
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Locations near you

Unfortunately, there are no recruiting locations near you. Please check the list with all locations below.
Tris trial is registered with FDA with number: NCT03025763. The sponsor of the trial is Icahn School of Medicine at Mount Sinai and it is looking for 4000 volunteers for the current phase.
Official trial title:
Craniosynostosis Network