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International Congenital Central Hypoventilation Syndrome (CCHS) REDCap Registry and CCHS Secure Health-hub Advancing Research Efforts
The Center for Autonomic Medicine in Pediatrics (CAMP), in collaboration with leading CCHS clinicians, scientists, and patient advocacy groups around the world…
Congenital Central Hypoventilation Syndrome
Debra Weese-MayerNCT03088020
CCHS SHARE: A Multi-center Longitudinal Natural History Study
The purpose of this study is to capture longitudinal natural history data in Congenital Central Hypoventilation Syndrome (CCHS). This will include capturing st…
Congenital Central Hypoventilation Syndrome
Ann & Robert H Lurie Children's Hospital of ChicagoNCT06554275
Neurocognitive Outcome as a Metric for Evaluating Therapeutic Intervention and Treatment Mechanisms in Congenital Central Hypoventilation Syndrome (CCHS): A Multi-Site Study Using The NIH Toolbox
Congenital central hypoventilation syndrome (CCHS) is a rare disorder of autonomic and respiratory regulation that frequently alters oxygen delivery to the bra…
Congenital Central Hypoventilation SyndromeCongenital Central HypoventilationCCHS+3 more
Debra Weese-MayerNCT03568669