Ignite Creation Date:
2024-10-26 @ 3:37 PM
Last Modification Date:
2024-10-26 @ 3:37 PM
Study NCT ID:
NCT06554275
Status:
NOT_YET_RECRUITING
Last Update Posted:
None
First Post:
2024-08-09
Brief Title:
CCHS Secure Health-hub Advancing Research Efforts CCHS SHARE
Sponsor:
None
Organization:
None
Study Overview
Official Title:
CCHS SHARE A Multi-center Longitudinal Natural History Study
Status:
NOT_YET_RECRUITING
Status Verified Date:
2024-08
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
No
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
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
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 diseases collecting enough information to understand disease natural history is challenging Knowledge and data sharing is a key to overcoming this challenge Investigators at Lurie Childrens are collaborating with teams at other CCHS medical and research centers and patient advocacy groups to build a shared resource called the CCHS Secure Health-hub Advancing Research Efforts CCHS SHARE CCHS SHARE will advance knowledge of CCHS natural history and guide future research studies and clinical trials The purpose of this study is to collect and store CCHS natural history data over the course of many years in CCHS SHARE Collected information will include patient and family self-reports surrounding their health and its impact on daily life information collected during standard clinical care medical records family history and other related information from patients Information in CCHS SHARE will be used for medical research to better understand CCHS and to develop new treatments
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None