Red blood cell transfusions may be a life-sustaining therapy for individuals living with sickle cell disease, thalassemia and other conditions that affect the structure, chemistry, or production of red blood cells— often referred to as hemoglobinopathies. Clinical guidelines that provide evidence-based recommendations in these settings are important to inform optimal transfusion strategies for patients.
Since 2018, Canadian Blood Services has supported the development of evidence-based guidelines on red blood cell transfusion in patients with hemoglobinopathies through its work with the International Collaboration for Transfusion Medicine Guidelines (ICTMG). The ICTMG is an independent collaborative of volunteers with expertise in transfusion medicine and related disciplines whose vision is “The right transfusion, always, everywhere”.
In 2018, the ICTMG published a systematic review of scientific evidence on hemoglobinopathies and a clinical guideline for red blood cell specifications in this patient population. Affirmations and endorsements from organizations such as the American Society of Hematology (ASH) and National Advisory Committee on Blood and Blood Products (NAC) helped share the guideline with knowledge users in Canada and internationally, while ICTMG project members also developed supporting resources in various formats to support health-care professionals to implement the guideline’s recommendations. Funding to complete the systematic review and develop the guideline was partially provided by Canadian Blood Services, and the development of a podcast about the guideline was supported by a BloodTechNet award from Canadian Blood Services.
Now, these important publications are in the process of being updated with current evidence. Starting in 2023, the ICTMG updated the systematic review to include evidence published from 2016 to June 2023. As part of the hemoglobinopathies guideline update, the ICTMG incorporated perspectives of lived experience, an important addition made possible with input from caregiver representative, Biba Tinga, as well as patient representative, Ulysse Guerrier.
It's very important to have a bigger pool of diverse donors. There are a lot of people like me who need blood.
- Ulysse, blood receipient, living with sickle cell disease
Some of what ICTMG heard from their engagement in this guideline update process included an emphasis on the importance of avoiding adverse effects of red blood cell transfusion while ensuring blood is available when needed (like during surgeries or emergencies), and the need for a sufficiently large and diverse donor base to support the ability to match rare blood needs.
The ICTMG is currently preparing to publish the updated hemoglobinopathies guideline in a peer-reviewed journal. It will be available on the ICTMG’s website, ICTMG.org, once available.
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The opinions reflected in this post are those of the author and do not necessarily reflect the opinions of Canadian Blood Services nor do they reflect the views of Health Canada or any other funding agency.