RecruitingNCT06554275

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

CCHS SHARE: A Multi-center Longitudinal Natural History Study


Sponsor

Ann & Robert H Lurie Children's Hospital of Chicago

Enrollment

125 participants

Start Date

Sep 1, 2024

Study Type

OBSERVATIONAL

Conditions

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


Eligibility

Inclusion Criteria1

  • Participants with a confirmed CCHS diagnosis (confirmed alveolar hypoventilation and PHOX2B mutation testing results), of all ages and genders, who are followed clinically.

Exclusion Criteria1

  • An unconfirmed diagnosis of CCHS or unconfirmed PHOX2B mutation or not followed clinically

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Locations(1)

Ann & Robert H Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

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NCT06554275


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