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  NINDS Craniosynostosis 
  
Reviewed  07-01-2001  

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What is Craniosynostosis?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations

What is Craniosynostosis?
Craniosynostosis is a congenital anomaly characterized by premature closure—before the completion of brain growth—of one or more cranial sutures (the fibrous joints between the bones of the skull). The disorder results in an abnormality of the shape of the skull. The condition may be familial; a result of a chromosomal or genetic abnormality; or it may occur sporadically, with no other affected relatives. Some cases are associated with disorders such as microcephaly (abnormally small head) and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). The first sign is an abnormal head shape. Other symptoms, which include increased intracranial pressure, developmental delay, and mental retardation, may be caused by constriction of the growing brain. Seizures and blindness may also occur.

Is there any treatment?
Treatment for craniosynostosis generally consists of surgery (usually performed early in life) to relieve increased intracranial pressure, assure capacity of the skull to accommodate brain growth, and improve the appearance of the head.

What is the prognosis?
Prognosis for craniosynostosis varies depending on whether single or multiple sutures are involved and the presence of associated abnormalities. 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, thus, offers hope for new means to treat and prevent congenital anomalies, including craniosynostosis.

Select this link to view a list of studies currently seeking patients.

 Organizations

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291


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.


Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892




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