NCT04872179Recruiting
International Registry of Patients With Alpha Thalassemia
University of California, San Francisco
Start Date
1/1/2017
Completion Date
1/1/2037
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.
Eligibility Criteria
Age Range: No minimum to No maximum
Inclusion Criteria:
* diagnosis of alpha thalassemia (prenatal or postnatal) with genotype consistent with ATM or BHFS phenotype
* referred to the University of California, San Francisco Fetal Treatment Center for fetal diagnosis, management and/or evaluation for the ongoing in utero stem cell transplantation clinical trial
Exclusion Criteria:
\- none
Conditions
Alpha-ThalassemiaAlpha Thalassemia MajorAlpha Thalassemia Minor
Locations
University of California San Francisco
San Francisco, California 94143
United States