International Registry of Patients With Alpha Thalassemia — ATM Registry  

Alpha-Thalassemia Clinical Trial

Official title: International Prospective Registry of Patients With Alpha Thalassemia

Status Recruiting

Clinical Trial 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.

Clinical Trial 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. ;

Related Conditions & MeSH terms

• Alpha Thalassemia Major
• Alpha-Thalassemia
• beta-Thalassemia
• Thalassemia

• NCT number: NCT04872179
• Study type: Observational [Patient Registry]
• Source: University of California, San Francisco
• Contact: Billie Lianoglou, LCGC
• Phone: (415) 476-2461
• Email: billie.lianoglou@ucsf.edu
• Status: Recruiting
• Start date: January 2017
• Completion date: January 2037