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

Part of paid clinical trials in Chicago, Illinois.

Sponsor
Ann & Robert H Lurie Children's Hospital of Chicago
Study ID
NCT06554275
Status
Recruiting
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Conditions

  • Congenital Central Hypoventilation Syndrome

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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 Dates

Start date
Sep 1, 2024
Status verified
Jul 2025
Primary completion
Jun 1, 2028
Completion
Aug 31, 2028

Study Design

Enrollment
125 participants (estimated)

Primary Outcome Measure

Patient Quality of Life [ Time Frame: Up to every 14 months ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Ann & Robert H Lurie Children's Hospital of ChicagoChicagoIllinois60611
Casey M Rand, MSDS
[email protected]
312-227-3300
Erin Lonergan, MS
[email protected]
312-227-3300
Debra E Weese-Mayer, MD (PRINCIPAL_INVESTIGATOR)

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