CCHS SHARE: A Multi-center Longitudinal Natural History Study

What this Trial Is About

Researchers are conducting a multi-center observational study called CCHS SHARE to collect long-term natural history data on Congenital Central Hypoventilation Syndrome (CCHS). This rare disease affects breathing and autonomic functions, and understanding its progression over time is difficult due to limited data. The study aims to build a shared resource by gathering standardized clinical information and patient-reported experiences from several CCHS referral centers to advance knowledge and support future research and treatments. The study collects data from routine clinical care visits at multiple centers, involving participants of all ages and genders with confirmed CCHS diagnoses. Information gathered includes patient and family health reports, medical records, family history, and other relevant data. These data are stored securely in the CCHS SHARE database, which supports collaboration among researchers, clinicians, and patient advocacy groups. Participants contribute information up to every 14 months, including quality of life, caregiver burden, sleep patterns, autonomic symptoms, and clinical features using standardized common data elements. The study monitors these outcomes longitudinally to better characterize CCHS from a clinical perspective. Participation involves regular follow-ups aligned with standard care, and data collected helps guide future clinical studies. The study is funded by the FDA OOPD and led by Ann & Robert H Lurie Children's Hospital of Chicago.

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