What to know
- Thalassemia is a complex group of inherited blood disorders commonly found in people of Italian, Greek, Middle Eastern, Southern Asian, and African descent
- Severe forms of thalassemia usually are diagnosed in early childhood and are lifelong conditions
- Healthcare providers caring for people with thalassemia may find the information in this toolkit useful
Continuing Medical Education offerings and webinars
Virtual Thalassemia Grand Rounds
CDC and the Cooley's Anemia Foundation (CAF) offer ongoing education, with free continuing education credits (CME, CNE, and CEUs), through the Virtual Thalassemia Grand Rounds. These rounds provide evidence-based training for healthcare providers and meet CDC's Quality Training Standards. The rounds provide key clinical updates on various topics of thalassemia treatment, care, and management. View past presentations in the archives.
Webinars on thalassemia
Visit the archives to view a variety of CDC-funded webinars on thalassemia.
All Grown Up—Ensuring Effective Care Transitions in Beta-thalassemia
These rounds are offered by the American Society of Hematology, in collaboration with the France Foundation. Learn more here.
Thalassemia Essentials
Learn more about thalassemia in this podcast, led by Sujit Sheth, MD, director of the New York Comprehensive Thalassemia Center in New York City.
CDC activities related to transfusion complications in thalassemia
Learn more about CDC's work to provide information about the complications that can occur after people with thalassemia receive blood transfusions.
Resources on newborn screening
Learn more about CDC's work in newborn screening for thalassemia.
View the publication Hemoglobinopathies: Current Practices for Screening, Confirmation and Follow-up. This publication, developed by the Association of Public Health Laboratories through CDC funding, is used worldwide as a resource in hemoglobinopathies screening.
Read an article in CDC's Morbidity and Mortality Weekly Report (MMWR) titled Newborn Screening Practices and Alpha Thalassemia Detection — United States, 2016.
Read an article titled Newborn Screen Practices for Beta-Thalassemia in the United States.
Learn more about carrier screening for genetic conditions in this Committee Opinion published by the American College of Obstetricians and Gynecologists.
Learn about carrier screening
Thalassemia treatment centers
Below are the locations and contact information for each of the thalassemia treatment centers.
Additional Resources
Resources for thalassemia care, treatment, and management
View resources on best practices for the management of people with thalassemia. Reports on care practices have been developed by (1) UCSF Benioff Children's Hospital, Northern California Comprehensive Thalassemia Center, a large thalassemia center of excellence in the United States, and (2) the Thalassemia International Federation (TIF). TIF is an umbrella organization with 232 member associations in 62 countries and is focused on thalassemia care worldwide.*
- View UCSF Benioff's Standard-of-Care Clinical Practice Guidelines.
- View TIF 2017 Guidelines for the Management of Non Transfusion Dependent Thalassemia (second edition).
- View TIF 2021 Guidelines for the Management of Transfusion Dependent Thalassemia.
Clinical thalassemia management checklists
These evidence-based checklists were developed as expert consensus documents and reviewed by the scientific medical advisory board of the Cooley's Anemia Foundation (CAF). This work was funded by the Health Resources and Services Administration.*
- Monitoring Deferasirox Therapy
- Guidelines for Managing Transfusion Therapy for Thalassemia
- Monitoring of Iron Overload in Transfusion-Dependent Thalassemia
Thalassemia transfusion resources
View a collection of thalassemia transfusion resources developed for healthcare providers, blood banks, and persons with thalassemia and their families.
The materials have been developed as a supplemental (user-friendly) resource for healthcare providers, blood banks, and persons with thalassemia and their families to provide key information from a recent evidence-based report that details recommendations for the transfusion management of beta (β) thalassemia in the United States.**
What to Transfuse: Specifications for Red Cell Products
Initiating Regular Transfusions
Initiating Regular Transfusions
Understanding a Transfusion Plan
Other clinical management resources*
Optimal Growth in Patients with Thalassemia Learn more about growth issues in thalassemia, presented by Tariq Ahmad, MD, FAAP, UCSF Benioff Children's Hospital Oakland.
Transitioning to Adult Healthcare in Thalassemia View this resource to learn more about best practices for the successful transition of care from adolescence to adulthood, presented by Farzana Sayani, MD, MSc, University of Pennsylvania.
Fertility and Pregnancy in Thalassemia View this resource to learn more about clinical management issues in fertility and pregnancy in thalassemia, presented by Farzana Sayani, MD, MSc, University of Pennsylvania.
Other links of interest
Video Series on Living with Thalassemia
Learn more about thalassemia by visiting CAF. Their mission is to advance the treatment and cure for thalassemia; enhancing the quality of life of patients; and educating the medical profession, trait carriers, and the public about thalassemia.
Learn about Hemoglobin H disease, a form of alpha thalassemia.
View a searchable database of clinical trials for thalassemia. ClinicalTrials.gov is a database of privately and publicly funded clinical trials and is provided by the U.S. National Library of Medicine.
Footnotes
* While links to these resource materials are included here as a resource for healthcare providers, they are not part of CDC guidelines and recommendations. The reports were developed independent of CDC, and the contents are solely the responsibility of the authors and do not necessarily represent the official views of, nor an endorsement by, CDC or the Department of Health and Human Services.
** The thalassemia transfusion resources are not part of CDC guidelines and recommendations. The original evidence-based report and recommendations were developed in 2021 by a multi-disciplinary committee, the Thalassemia Western Consortium. Their work on clinical recommendations for transfusion practices was independent of CDC, and the contents of the resulting published report and these thalassemia transfusion resources are solely the responsibility of the authors and do not necessarily represent the official views of, nor an endorsement by, CDC or the Department of Health and Human Services.