CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)

The purpose of this study is to capture longitudinal natural history data in Congenital Central Hypoventilation Syndrome (CCHS). This will include capturing standardized clinical data from standard of care assessments at several CCHS referral centers. Funding source-FDA OOPD

NCT Number	NCT06554275
Lead Sponsor	Ann & Robert H Lurie Children's Hospital of Chicago Collaborators: Groupe Hospitalier Pitie-Salpetriere, Great Ormond Street Hospital for Children NHS Foundation Trust, Hopital Universitaire Robert-Debre
Conditions	Congenital Central Hypoventilation Syndrome
Enrollment	125 participants
Start Date	2024-09-01
Primary Completion	2028-06-01 (estimated)
Study Completion	2028-08-31 (estimated)
Updated on ClinicalTrials.gov	2025-07-16