RecruitingNot Applicable

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

United States125 participantsStarted 2024-09-01

Plain-language summary

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

Who can participate

SexALL

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Inclusion Criteria: Participants with a confirmed CCHS diagnosis (confirmed alveolar hypoventilation and PHOX2B mutation testing results), of all ages and genders, who are followed clinically. Exclusion Criteria: An unconfirmed diagnosis of CCHS or unconfirmed PHOX2B mutation or not followed clinically