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

Recruiting now

Conditions studied: Congenital Central Hypoventilation Syndrome

In brief

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

Key facts

Study ID

NCT06554275

Run by

Ann & Robert H Lurie Children's Hospital of Chicago

People needed

125

Starts

2024-09-01

Expected to finish

2028-08-31

Last updated by the study team

2025-07-16

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

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

You may not qualify if…

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

Where it is running

• Ann & Robert H Lurie Children's Hospital of Chicago — Chicago, Illinois, United States (enrolling)

Full record on ClinicalTrials.gov

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