Actively Recruiting
CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)
Led by Ann & Robert H Lurie Children's Hospital of Chicago · Updated on 2025-07-16
125
Participants Needed
1
Research Sites
208 weeks
Total Duration
On this page
Sponsors
A
Ann & Robert H Lurie Children's Hospital of Chicago
Lead Sponsor
G
Groupe Hospitalier Pitie-Salpetriere
Collaborating Sponsor
AI-Summary
What this Trial Is About
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
CONDITIONS
Official Title
CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Participants with a confirmed diagnosis of Congenital Central Hypoventilation Syndrome (CCHS)
- Confirmed alveolar hypoventilation and PHOX2B mutation testing results
- Participants of all ages and genders
- Participants who are clinically followed for CCHS
You will not qualify if you...
- Participants without a confirmed diagnosis of CCHS
- Participants without confirmed PHOX2B mutation testing
- Participants not clinically followed for CCHS
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Ann & Robert H Lurie Children's Hospital of Chicago
Chicago, Illinois, United States, 60611
Actively Recruiting
Research Team
C
Casey Rand, MSDS
CONTACT
E
Erin Lonergan, MS
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here