Other Names for this Disease
- Cleidocranial dysostosis
- Dysplasia cleidocranial
- Marie-Sainton disease
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There is no specific treatment for cleidocranial dysplasia (CCD), and management is based on each person's symptoms. Most people with CCD need dental care due to various dental abnormalities. If bone density is below normal, supplements of calcium and vitamin D may be needed, and preventive treatment for osteoporosis may be started at a young age. Those with frequent ear infections may need ear tubes. Severe defects of the cranial vault (space in the skull occupied by the brain) should be protected by wearing helmets during high-risk activities. Surgery may be needed to correct any of various skeletal (bone) abnormalities.
Last updated: 4/7/2016
- Mendoza-Londono R & Lee B. Cleidocranial dysplasia. GeneReviews. 2013; http://www.ncbi.nlm.nih.gov/books/NBK1513/.
- GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
- The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. There is a study titled Evaluation and Treatment of Skeletal Diseases which may be of interest to you.
- Orphanet lists European clinical trials, research studies, and patient registries enrolling people with this condition.