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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. ;


Study Design


Related Conditions & MeSH terms


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
Phase
Start date January 2017
Completion date January 2037

See also
  Status Clinical Trial Phase
Recruiting NCT05687474 - Baby Detect : Genomic Newborn Screening
Withdrawn NCT01419704 - Phase I/II Pilot Study of Mixed Chimerism to Treat Hemoglobinopathies Phase 1/Phase 2