NCT06554275 CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)
| NCT ID | NCT06554275 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Ann & Robert H Lurie Children's Hospital of Chicago |
| Condition | Congenital Central Hypoventilation Syndrome |
| Study Type | OBSERVATIONAL |
| Enrollment | 125 participants |
| Start Date | 2024-09-01 |
| Primary Completion | 2028-06-01 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 125 participants in total. It began in 2024-09-01 with a primary completion date of 2028-06-01.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
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 care assessments at several CCHS referral centers. Funding source-FDA OOPD
Eligibility Criteria
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
Contact & Investigator
Debra E Weese-Mayer, MD
PRINCIPAL INVESTIGATOR
Ann & Robert H Lurie Children's Hospital of Chicago
Frequently Asked Questions
Who can join the NCT06554275 clinical trial?
This trial is open to participants of all sexes, studying Congenital Central Hypoventilation Syndrome. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT06554275 currently recruiting?
Yes, NCT06554275 is actively recruiting participants. Contact the research team at Crand@luriechildrens.org for enrollment information.
Where is the NCT06554275 trial being conducted?
This trial is being conducted at Chicago, United States.
Who is sponsoring the NCT06554275 clinical trial?
NCT06554275 is sponsored by Ann & Robert H Lurie Children's Hospital of Chicago. The principal investigator is Debra E Weese-Mayer, MD at Ann & Robert H Lurie Children's Hospital of Chicago. The trial plans to enroll 125 participants.