International Registry of Patients With Alpha Thalassemia
Launched by UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · Apr 30, 2021
Trial Information
Current as of June 28, 2025
Recruiting
Keywords
ClinConnect Summary
The International Registry of Patients With Alpha Thalassemia is a study aimed at understanding how alpha thalassemia affects patients over time and how certain treatments during pregnancy can improve outcomes for those with this condition. Alpha thalassemia is a blood disorder that can range in severity, and this registry will help researchers learn more about the disease to improve care for patients and their families.
To be eligible for this study, individuals must have a diagnosis of alpha thalassemia, either before or after birth, and should be referred to the University of California, San Francisco Fetal Treatment Center for evaluation and possible treatment options. There are no specific exclusions, so anyone meeting the criteria can participate. Participants can expect to contribute to important research that could enhance the management of alpha thalassemia in future patients while also receiving care from expert medical professionals.
Gender
ALL
Eligibility criteria
- 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
About University Of California, San Francisco
The University of California, San Francisco (UCSF) is a leading academic institution renowned for its commitment to advancing healthcare through innovative research and clinical trials. With a focus on translating scientific discoveries into effective therapies, UCSF collaborates with a diverse array of stakeholders, including healthcare professionals, industry partners, and patient communities. The university's research programs emphasize interdisciplinary approaches and leverage cutting-edge technology to address complex medical challenges. As a sponsor of clinical trials, UCSF is dedicated to maintaining the highest standards of ethical conduct and scientific rigor, ensuring the safety and well-being of participants while contributing to the broader medical knowledge base.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
San Francisco, California, United States
Patients applied
Trial Officials
Tippi C MacKenzie, MD
Principal Investigator
University of California, San Francisco
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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