CCHS SHARE: A Multi-center Longitudinal Natural History Study
Status: Recruiting
Location: See location...
Study Type: Observational
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
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Participants with a confirmed CCHS diagnosis (confirmed alveolar hypoventilation and PHOX2B mutation testing results), of all ages and genders, who are followed clinically.
Locations
United States
Illinois
Ann & Robert H Lurie Children's Hospital of Chicago
RECRUITING
Chicago
Contact Information
Primary
Casey Rand, MSDS
Crand@luriechildrens.org
312-227-3300
Backup
Erin Lonergan, MS
ersmith@luriechildrens.org
312-227-3300
Time Frame
Start Date: 2024-09-01
Estimated Completion Date: 2028-08-31
Participants
Target number of participants: 125
Related Therapeutic Areas
Sponsors
Collaborators: Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital universitaire Robert Debré, Great Ormond Street Hospital for Children NHS Foundation Trust, Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital de la Pitié-Salpêtrière
Leads: Ann & Robert H Lurie Children's Hospital of Chicago