Craniosynostosis

What is craniosynostosis?

Craniosynostosis occurs when the bones of the skull close together before the brain fully develops. The skull has fibers—called sutures—that connect parts of the skull and allow the brain to grow while it develops. Often, only one suture will close early. Premature fusing of the sutures results in a misshapen skull that cannot expand for the growing brain. This leads to increased pressure in the skull and impaired development of the brain. Symptoms of craniosynostosis are:

  • Unusual skull shape and possibly unusually small head
  • Increased pressure inside the skull
  • Accumulation of fluid in the skull (hydrocephalus)
  • Impaired brain development
  • Developmental delays and impaired cognitive development
  • Seizures
  • Loss of sight

    Craniosyntosis can be caused by a genetic error, metabolic disease, or an overactive thyroid. Surgery can help relieve pressure on the brain and nerves and reshape the skull. Some children can use a mold that helps shape the skull and lets the brain grow.

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    Learn About Clinical Trials
    Clinical trials are studies that allow us to learn more about disorders and improve care. They can help connect patients with new and upcoming treatment options.

    How can I or my loved one help improve care for people with craniosynostosis?

    Consider participating in a clinical trial so clinicians and scientists can learn more about craniosynostosis and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.

    All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.

    For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with craniosynostosis at Clinicaltrials.gov.

    Where can I find more information about craniosynostosis?

    Information may be available from the following resources:

    Genetic and Rare Diseases (GARD) Information Center

    MedlinePlus