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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

Estimated

~$10 – $1,125

Ilya KhaytinNCT03088020

International Rapid-onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD) REDCap Registry

The Center for Autonomic Medicine in Pediatrics (CAMP) has collaborated with doctors from around the world to build the first International ROHHAD (Rapid-onset…

ROHHADRapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation

Estimated

~$10 – $1,125

Ilya KhaytinNCT03135730

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

Estimated

~$10 – $1,125

Ilya KhaytinNCT03568669

Observational

Structural Modification In Supraglottic Airway Device Enhances Exchange Between Supraglottic & Endotracheal Ventilation Modes

The proposed A/Z modification of a supraglottic airway (SGA) incorporates an opening in the SGA body that enables access to the endotracheal tube (ETT) through…

Airway Complication of AnesthesiaVentilation Therapy; ComplicationsHypoxia+1 more

Estimated

~$10 – $6,250

The Cleveland ClinicNCT04498598

Postoperative Respiratory and Activity Monitoring

This study plans to learn more about specific breathing and activity recommendations for patients after surgery. Participants will be monitored after abdominal…

HypoventilationHypoxemiaPostoperative Pulmonary Complications

Estimated

~$10 – $750

University of Colorado, DenverNCT06239831

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

Estimated

~$10 – $750

Ann & Robert H Lurie Children's Hospital of ChicagoNCT06554275