Provider and Patient Resources

Learn more about transfusion-dependent
beta-thalassemia (TDT) with these resources

blood cells

Provider and Patient Resources

Learn more about transfusion-dependent
beta-thalassemia (TDT) with these resources

Educational Resources

Educational Resources

Explore these resources for more information about transfusion-dependent beta-thalassemia (TDT).

Resources for you

Challenge TDT Guide

Challenge TDT Guide Challenge TDT Guide

An overview of TDT, transfusion therapy, allo-HSCT, quality of life and more.
Download

Resources for your patients

Help patients better understand the current impact TDT has on their lives, set goals, and plan for the future.

Visit LifeWithBetaThal.com
Understanding Beta-Thalassemia Brochure

Understanding Beta‑Thalassemia Brochure Understanding Beta‑Thalassemia Brochure

A quick, takeaway guide to help patients better understand the genetic basis of their beta-thalassemia.
Download
Patient Goals Guide

Goals Guide Goals Guide

A guide for patients to help them create a care plan with their care team for short- and long-term goals.
Download

Expert & Patient Videos

Expert & Patient Videos

Hear what beta-thalassemia experts and real-life patients have to say about treatments and quality of life with TDT.

Expert Perspectives

Transfusion Therapy Videos

TDT expert Dr. Cappellini discusses transfusion therapy, iron monitoring, chelation, adherence to treatment, and her key takeaways.

Video of Dr. Cappellini talking about the role of chronic red blood cell transfusion in the management of TDT, treatment goals, and how it leads to iron overload.

Chapter 1: Transfusion Therapy

Chapter 1: Transfusion Therapy

Dr. Cappellini talks about the role of regular, lifelong red blood cell transfusion in the management of TDT, treatment goals, and how it leads to iron overload.
Video discussing the treatment of iron overload caused by chronic transfusion therapy in transfusion-dependent beta-thalassemia

Chapter 2: Iron Monitoring and Chelation

Chapter 2: Iron Monitoring and Chelation

Dr. Cappellini discusses the role of iron monitoring and the goals of iron chelation in the treatment of iron overload caused by transfusion therapy in TDT.
Video summarizing key takeaways about transfusion and chelation therapy

Chapter 3: Adherence to Treatment and Key Takeaways

Chapter 3: Adherence to Treatment and Key Takeaways

Dr. Cappellini talks about various factors that may impact patient adherence to treatment and summarizes key takeaways about transfusion and chelation therapy.

Allogeneic hematopoietic stem cell transplant videos

Allogeneic HSCT expert Dr. Baronciani discusses the history of HSCT, clinical outcomes in patients with TDT, and making the decision to undergo HSCT.

Video of Dr. Baronciani on the history of hematopoietic stem cell transplants for beta-thalassemia

Chapter 1: History of HSCT for Beta-Thalassemia

Chapter 1: History of HSCT for Beta-Thalassemia

Dr. Baronciani talks about the history of HSCT in TDT and her team’s first analysis of outcomes in TDT patients from the European Society for Blood and Marrow Transplantation (EBMT) registry.
Video on clinical outcomes of hematopoietic stem cell transplantations in transfusion dependent beta-thalassemia patients

Chapter 2: Clinical Outcomes of HSCT in Patients With TDT

Chapter 2: Clinical Outcomes of HSCT in Patients With TDT

Dr. Baronciani discusses her team’s latest analysis of HSCT clinical outcomes in TDT patients who underwent the procedure between 2000 and 2017.  
Video discussing the factors that go into making the decision to undergo HSCT for transfusion-dependent beta-thalassemia

Chapter 3: Making the Decision to Undergo HSCT for TDT

Chapter 3: Making the Decision to Undergo HSCT for TDT

Dr. Baronciani talks about the factors that go into making the decision to undergo HSCT for TDT and how it impacts quality of life and survival compared to conventional treatment.

Patient Perspectives

Hear from real-life patients about the challenges they and their families face when living with TDT.

Hear how Rammeet and her family have managed her TDT together.

Rammeet’s Story

Rammeet’s Story

Rammeet’s family traveled across the world to ensure she received the best care possible. Hear how Rammeet and her family have managed her TDT together.
Hear how Josephine has faced challenges throughout her journey with TDT.

Josephine’s Story

Josephine’s Story

Despite regular transfusions and chelation therapy, Josephine strives to stay positive when managing her TDT. Hear how Josephine has faced challenges throughout her journey with TDT.

Academic Publications

Academic Publications

Links are provided for informational purposes only. We do not make or imply any endorsement of external websites or organizations.

TREATMENT GUIDELINES

Find guidelines for the standard management and monitoring of patients with thalassemia, how regular transfusion therapy extends life expectancy, and complications of therapy.

Guidelines for the Standard Monitoring of Patients With Thalassemia: Report of the Thalassemia Longitudinal Cohort.

 

 

Tubman VN, et al., 2015

2021 Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT). 4th ed.

 

 

Thalassaemia International
Federation (TIF), 2021

Guidelines for Managing Transfusion Therapy for Thalassemia

 

 

Cooley’s Anemia Foundation, 2018

Monitoring of Iron Overload in Transfusion-Dependent Thalassemia (TDT)

 

 

Cooley’s Anemia Foundation, 2018

ALLOGENEIC HSCT

Learn more about allogeneic hematopoietic stem cell transplantation in thalassemia, effects on patient quality of life, and managing iron overload.

Hemopoietic stem cell transplantation in thalassemia: a report from the European Society for Blood and Bone Marrow Transplantation Hemoglobinopathy Registry, 2000‑2010.

 

 

Baronciani D, et al., 2016

Quality of Life in Thalassemia: A Comparison of SF-36 Results from the Thalassemia Longitudinal Cohort to Reported Literature and the US Norms.

 

 

Sobota A, et al., 2011

Management of iron overload before, during, and after hematopoietic stem cell transplantation for thalassemia major.

 

 

 

Angelucci E, et al., 2016

Hematopoietic stem cell transplantation in thalassemia and sickle cell anemia.

 

 

 

Lucarelli, et al., 2012

Long-term survival of Beta-thalassemia major patients treated with hematopoietic stem cell transplantation compared with survival with conventional treatment.

 

 

Caocci G, et al., 2017

A Multicenter Retrospective Analysis Stressing the Importance of Long‑Term Follow‑Up after Hematopoietic Cell Transplantation for β‑Thalassemia.

 

 

Chaudhury S, et al., 2017

Related and unrelated donor transplantation for β‑thalassemia major: results of an international survey.

 

 

Li S, et al., 2019

Professional and Patient Organizations

Professional and Patient Organizations

Here are some* professional and patient organizations with helpful resources and information about beta-thalassemia, transfusion and chelation therapy, allogeneic HSCT, and the impact of TDT on patients’ lives.

Professional

Professional

Thalassaemia International Federation

 

 

American Society of Hematology

 

 

American Society for Transplantation and Cellular Therapy

 

 

Center for International Blood & Bone Marrow Transplant Research

 

 

Patient

Patient

Cooley's Anemia Foundation

 

 

Thalassemia International Federation

 

 

Thalassemia Support Foundation

 

 

*Not an exhaustive list of all organizations.
Links are provided for informational purposes only. We do not make or imply any endorsement of external websites or organizations.