Follows people with alpha thalassemia to learn how the disease progresses
Records the course of alpha thalassemia and outcomes of fetal treatments over time.
Plain-language title generated from the registry record
Registry title: International Registry of Patients With Alpha Thalassemia
Key facts
- Where
- San Francisco, United StatesSee the site
Where in United States
- University of California San FranciscoSan Francisco, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of California, San Francisco
- Trial code
- NCT04872179
- Record updated
- 2 September 2026
- Original description
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.Read full original descriptionShow less
International Prospective Registry of Patients With Alpha Thalassemia
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.
Inclusion: 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: none.