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Clinical trial opportunity for Myelodysplastic Syndrome (MDS) patients receiving blood transfusions

From time to time Blood Cancer Uncensored is asked to highlight clinical research studies or surveys. Today we are highlighting a survey which might ultimately lead to you being offered a chance to be part of a clinical research project examining a new treatment. If you are involved in a clinical trial or market research survey that might benefit from being featured on a blood cancer patient website and Facebook group do get in touch by email on bloodcanceruncensored@gmail.com

Here is some abreviated information from the organisation that has asked for our help. This study is available in the USA, UK, Canada and Australia. More information is available on this website:

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Myelodysplastic Syndrome (MDS) is a group of bone marrow disorders, where immature blood cells (stem cells) in the bone marrow do not mature the right way. It is a disease that is primarily affecting the elderly (older than 65), but younger people may also get the disease. The cause of the disease is often unknown. Anemia (low blood cell counts) is a hallmark feature of myelodysplastic syndrome and is responsible for some of the symptoms that patients experience, such as infections, spontaneous bleeding or easy bruising, fatigue, shortness of breath and pale skin. 

The current treatment for lower-risk myelodysplastic syndrome is:

* Supportive treatment to enhance production of red blood cells (erythropoiesis stimulating agents – ESAs) 

* Blood transfusion (red blood cells transfusion and/or platelet transfusions)

* Treatment of infection 

If you are interested and qualify to participate in a research study, you will receive 1 out of the 2 types of medications, i.e., luspatercept or epoetin alfa. Luspatercept is the investigational medication to help anemia, while epoetin alfa is the current standard treatment. 

Please note that by participating in a research study, regardless of which two treatments you receive, you may contribute to the clinical research and further understanding of the treatments for MDS. However, you have the right to withdraw from the research study at any time and the study team will follow you up as appropriate. 

Who can participate?

You may participate in this research study if you meet all the following criteria:

* Male or female 

* Age 18 or above

* Have anemia due to bone marrow failure disorder (Myelodysplastic Syndrome (MDS))

* Receive red blood cell transfusions

For more information or to complete the initial survey click here:

https://www.health-panel.com/research-projects/research-study-for-adults-anemia-mds-myelodysplastic-syndrome/

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Adrian Warnock
  • Adrian Warnock
  • Dr. Adrian Warnock is a medical doctor and clinical research expert who was himself diagnosed with blood cancer in May 2017. Adrian worked in the pharmaceutical industry for fifteen years helping to run the clinical trials that bring us new medicines and communicate the results. Before this he practised in the UK’s National Health Service (NHS), as a psychiatrist, for eight years.

    Adrian is a published author, the founder of Blood Cancer Uncensored, and has written a Christian blog since 2003 at Patheos. He is passionate about learning how to approach suffering with hope and compassion. Adrian's articles are not medical advice and he is not a haematologist or blood cancer doctor. Always seek individualised advice from your health care professionals. You can e-mail Adrian here.