Status:
RECRUITING
CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)
Lead Sponsor:
Ann & Robert H Lurie Children's Hospital of Chicago
Collaborating Sponsors:
Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital de la Pitié-Salpêtrière
Great Ormond Street Hospital for Children NHS Foundation Trust
Conditions:
Congenital Central Hypoventilation Syndrome
Eligibility:
All Genders
Brief 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...
Detailed Description
The natural history of a disease is how a disease progresses over time and impacts the lives of patients and their families. In Congenital Central Hypoventilation Syndrome (CCHS), as in all rare disea...
Eligibility Criteria
Inclusion
- Participants with a confirmed CCHS diagnosis (confirmed alveolar hypoventilation and PHOX2B mutation testing results), of all ages and genders, who are followed clinically.
Exclusion
- An unconfirmed diagnosis of CCHS or unconfirmed PHOX2B mutation or not followed clinically
Key Trial Info
Start Date :
September 1 2024
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
August 31 2028
Estimated Enrollment :
125 Patients enrolled
Trial Details
Trial ID
NCT06554275
Start Date
September 1 2024
End Date
August 31 2028
Last Update
July 16 2025
Active Locations (1)
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1
Ann & Robert H Lurie Children's Hospital of Chicago
Chicago, Illinois, United States, 60611