NINDS Craniostenosis Information

What is Craniosynostosis?
Craniosynostosis is a birth defect of the brain characterized by the premature closure of one or more of the fibrous joints between the bones of the skull (called the cranial sutures) before brain growth is complete. Closure of a single suture is most common. The abnormally shaped skull that results is due to the brain not being able to grow in its natural shape because of the closure. Instead it compensates with growth in areas of the skull where the cranial sutures have not yet closed. The condition can be gene-linked, or caused by metabolic diseases, such as rickets or an overactive thyroid. Some cases are associated with other disorders such as microcephaly (abnormally small head) and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). The first sign of craniosynostosis is an abnormally shaped skull. Other features can include signs of increased intracranial pressure, developmental delays, or mental retardation, which are caused by constriction of the growing brain. Seizures and blindness may also occur.

Is there any treatment?
Treatment for craniosynostosis generally consists of surgery to relieve pressure on the brain and the cranial nerves. For some children with less severe problems, cranial molds can reshape the skull to accommodate brain growth and improve the appearance of the head.

What is the prognosis?
The prognosis for craniosynostosis varies depending on whether single or multiple cranial sutures are involved or other abnormalities are present. The prognosis is better for those with single suture involvement and no associated abnormalities.

What research is being done?
The NINDS conducts and supports a wide range of studies that explore the complex mechanisms of early neurological development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and offers hope for new ways to treat and prevent brain birth defects, including craniosynostosis.
Select this link to view a list of studies currently seeking patients.

Organizations
March of Dimes Foundation1275 Mamaroneck AvenueWhite Plains, NY 10605askus@marchofdimes.comhttp://www.marchofdimes.comTel: 914-428-7100 888-MODIMES (663-4637)Fax: 914-428-8203
Children's Craniofacial Association13140 Coit RoadSuite 307Dallas, TX 75240http://www.ccakids.comTel: 800-535-3643 214-570-9099Fax: 214-570-8811
The Arc of the United States1010 Wayne AvenueSuite 650Silver Spring, MD 20910Info@thearc.orghttp://www.thearc.orgTel: 301-565-3842Fax: 301-565-3843 or -5342
National Organization for Rare Disorders (NORD)P.O. Box 1968(55 Kenosia Avenue)Danbury, CT 06813-1968orphan@rarediseases.orghttp://www.rarediseases.orgTel: 203-744-0100 Voice Mail 800-999-NORD (6673)Fax: 203-798-2291
Prepared by:Office of Communications and Public LiaisonNational Institute of Neurological Disorders and StrokeNational Institutes of HealthBethesda, MD 20892

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
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Last updated February 12, 2007