Ignite Creation Date:
2024-05-06 @ 4:06 PM
Last Modification Date:
2024-10-26 @ 2:03 PM
Study NCT ID:
NCT04872179
Status:
RECRUITING
Last Update Posted:
2023-12-12
First Post:
2021-04-28
Brief Title:
International Registry of Patients With Alpha Thalassemia
Sponsor:
University of California San Francisco
Organization:
University of California San Francisco
Study Overview
Official Title:
International Prospective Registry of Patients With Alpha Thalassemia
Status:
RECRUITING
Status Verified Date:
2023-12
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:
ATM Registry
Brief Summary:
This is an international prospective registry of patients with Alpha thalassemia to understand the natural history of the disease and the outcomes of fetal therapies with the overall goal of improving the prenatal management of patients with Alpha thalassemia
Detailed Description:
The aim of this registry is to prospectively and retrospectively collect data on patients who are diagnosed with alpha thalassemia major and other alpha thalassemia mutations Data collected will be used to
1 Identify patient outcomes of therapies
2 Improve clinical management of patients with ATM
3 Improve medical decision making
4 Improve quality of care
1 Identify patient outcomes of therapies
2 Improve clinical management of patients with ATM
3 Improve medical decision making
4 Improve quality of care
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