NCT04872179

International Registry of Patients With Alpha Thalassemia

International Prospective Registry of Patients With Alpha Thalassemia

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 500 (estimated)
• Sponsor: University of California, San Francisco · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

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.

Conditions

• Alpha-Thalassemia
• Alpha Thalassemia Major
• Alpha Thalassemia Minor

Timeline

• Start date: 2017-01-01
• Primary completion: 2027-01-01
• Completion: 2037-01-01
• First posted: 2021-05-04
• Last updated: 2025-04-04

Locations

1 site across 1 country: United States