Literature

CCHS Network Information and CCHS Medical Publications

The CCHS Family Newsletter was published three times a year from 1990 to 2004. It was organized and edited by Mary Vanderlaan and produced by Lydia Jordan, CCHS moms. The Newsletter focused on providing information to CCHS families and medical professionals on: news about medical research and technological developments in the treatment of the disorder; news and stories from families coping with the home care of their technology-dependent children; discussions among families or families and physicians on medical or home health care issues, and news on Network education and outreach activities. The Newsletter was replaced by CCHS Family Website pages and Discussion Board after 2004. These old newsletters remain available to families on the secure Family Pages and contain useful information. In conjunction with the CCHS Family Website, a “CCHS Family Directory” is published and regularly updated, facilitating routine communication among affected families in North America and around the world. CCHS patients and families who are registered with the CCHS Family Network can access these directories on the secure pages. Patients and families can search MEDLINE online (a medical articles and publications service) for new CCHS research reports and articles. Typically, searching “congenital central hypoventilation syndrome” is most successful in pulling up new research on CCHS. Check the Medline site often to stay abreast of new work on CCHS.

A Sampling of Recent or Other Key Articles on CCHS

• ***NEW***Congenital Central Hypoventilation Syndrome: Neurocognitive Functioning in School Age Children
• ***NEW*** Genetic testing of CCHS written by Melinda Riccitelli, CCHS mom and Professor of Biology at Mira Costa College
• ***NEW*** Chemosensitivity recovery under treatment with desogestrel
• American Thoracic Society Statement on CCHS, 2010
• CCHS Cardiac Issues
• Effect of sleep stage on children with CCHS
• CCHS Medical References (a collection of key research articles from 2004 and earlier)
• CCHS Symptoms, Diagnosis and Genetic Findings
• CCHS Presentation, Diagnosis and Management
• Phrenic Nerve Pacing in CCHS
• Epidemiologic Survey of 196 Patients With Congenital Central Hypoventilation Syndrome
• Flying with a Ventilator in the USA
• PHOX2B Mutation–Confirmed Congenital Central Hypoventilation Syndrome
• Dermatoglyphics in CCHS
• Congenital Central Hypoventilation Syndrome PHOX2B Mutations and Phenotype
• Facial Phenotype in Children and Young Adults with PHOX2B–Determined Congenital Central Hypoventilation Syndrome: Quantitative Pattern of Dysmorphology