Introduction

Dear patient:

We are Canadian and United Kingdom hematologists affiliated with the international MDS Foundation, Inc. It is well known that transfusion dependence negatively impacts the quality of life of MDS patients and is unavoidable in many patients.  We are interested in designing studies to optimize the red blood cell transfusion experience for MDS patients and improve their quality of life. Before doing so, we must better understand how red blood cell transfusions are being conducted and ask you what could be done to make the experience better. 

This survey is for individuals with Myelodysplastic Syndromes (MDS) across the US, the UK, and Canada who are red blood cell transfusion dependent- defined as receiving at least one unit of red blood cells every eight weeks for a 4 month period. While you may also be receiving platelets, we are only interested in understanding the red blood cell transfusion experience at this time.

You are invited to participate in this survey because you have been identified as an individual who has been diagnosed with MDS. Your participation in this study is voluntary. You may choose not to participate in the survey or you may exit the survey at any time. 

This online survey will take approximately 5-10 minutes. Your responses will be kept strictly confidential. We do not collect any information that will personally identify you.

Clicking the “Next” button below indicates that you are 18 years of age or older, and indicates your consent to participate in this survey.

We thank you very much for considering this survey!

Yours Sincerely,

Rena Buckstein MD FRCPC Associate Professor, University of Toronto, Department of Medicine, Division of Hematology/Oncology
Yulia Lin MD FRCPC Associate Professor, University of Toronto, Department of Laboratory Medicine and Pathobiology
Jeannie Callum MD FRCPC Associate Professor, University of Toronto, Department of Laboratory Medicine and Pathobiology
Simon Stanworth MD Consultant Hematologist, NHS Blood and Transplant, Oxford University Hospitals NHS Trust

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