CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)
Recruiting
Observational Study
Congenital Central Hypoventilation Syndrome
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 125 (estimated)
- Sponsor
- Ann & Robert H Lurie Children's Hospital of Chicago · Other
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About This Trial
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
Trial Locations
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Eligibility Criteria
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 clin…
Contacts