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

CCHS SHARE: A Multi-center Longitudinal Natural History Study

Who can join

All ages · All sexes

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

About the study

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

Sponsor: Ann & Robert H Lurie Children's Hospital of Chicago · Participants: 125 · Started: Sep 1, 2024

Contact the study team

• Casey Rand, MSDS · Phone: 312-227-3300
• Erin Lonergan, MS · Phone: 312-227-3300

Official record on ClinicalTrials.gov — NCT06554275

Locations in the U.S.

Conditions

• Rare Diseases

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.