International Alpha Thalassemia Consortium


The International Alpha Thalassemia Consortium, hosted by the UCSF Center for Maternal-Fetal Precision Medicine, brings together an interdisciplinary group of clinicians and scientists from around the world to focus expertise in hematology, maternal-fetal medicine, genetics, fetal therapy, and neonatology on alpha thalassemia major (ATM).

We gather quarterly in a virtual seminar to share advances, challenges, and best practices regarding clinical care for prenatal, pediatric, and adult patients diagnosed with ATM.

All are welcome.

Next Quarterly Seminar

Monday, May 9, 2022
8:00-9:00 am (San Francisco), 5:00-6:00 pm (Leiden)
Find your time zone.


Past Seminars

February 22, 2022

Recording

  • Patients registry demographics
  • Outcomes in patients that pursued fetal therapy
  • Silver linings: unintended outcomes from referring provider collaborations

 

November 30, 2021

Recording

  • Risk of iron overload and its related complications in alpha thalassemia patients
  • Standard of care practices for iron overload monitoring
  • Review the currently available options for iron chelation

 

August 17, 2021

Recording

  • How and when to initiate invasive diagnostics and transfusion therapy in fetuses suspected to have alpha thalassemia
  • Technical aspects of determining how much to transfuse, the frequency of transfusions, and the role and technical considerations for fetal exchange transfusion
  • Troubleshooting strategies for difficult cases such as fetuses requiring transfusion at early gestational ages

 

May 20, 2021

Recording

  • current practices in hematopoietic stem cell transplantation for ATM, and upcoming advances that improve survival of babies with ATM

 


 

ATM Patient Registry & Clinical Trial

To refer a patient to the patient registry or clinical trial, please contact Billie.Lianoglou@ucsf.edu.

NCT04872179

The aim of this registry is to prospectively and retrospectively collect data on patients who are diagnosed with alpha thalassemia major (ATM) and other alpha thalassemia mutations. Data collected will be used to:

  1. Understand the natural history of the disease
  2. Identify patient outcomes of therapies
  3. Improve clinical management of patients with ATM
  4. Improve medical decision making
  5. Improve quality of care

NCT02986698

Clinical trial to evaluate the safety of in utero hematopoietic stem cell transplantation in fetuses with ATM, performed at the time of in utero transfusion of red blood cells.

Learn more about this trial at the UCSF Fetal Treatment Center.