Ignite Creation Date:
2024-05-06 @ 10:37 AM
Last Modification Date:
2024-10-26 @ 12:32 PM
Study NCT ID:
NCT03303716
Status:
RECRUITING
Last Update Posted:
2024-05-17
First Post:
2017-10-02
Brief Title:
ASXL-Related Disorders Registry
Sponsor:
University of California Los Angeles
Organization:
University of California Los Angeles
Study Overview
Official Title:
Clinical Registry for ASXL-Related Disorders and Disorders of Chromatin Remodeling
Status:
RECRUITING
Status Verified Date:
2024-05
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
A registry focused on the natural history management and treatment of patients with Bohring-Opitz Syndrome ASXL1 Shashi-Pena Syndrome ASXL2 and Bainbridge-Ropers Syndrome ASXL3
Detailed Description:
Study participants will be asked to complete a series of brief surveys over time about their medical condition The researchers will also attain primary medical recordsThe registry is based at UCLA as the IRB of record with collaborating sites at Boston Childrens Hospital Cincinnati Childrens Hospital and Duke University in a partnership with the Bohring-Opitz Syndrome BOS Foundation and ASXL-Rare Research Endowment ARRE The BOS Foundation and ARRE are non-profit organizations run by families of patients with ASXL-related disorders that are focused on supporting research The data is co-managed by the researchers and the family groups Aggregate data from the Registry will be shared with the participants as well as used for publication The Registry is HIPPA compliant and follows all the IRB requirements regarding securing and managing patient data
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None