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Priority #1 Would a national formal network of clinicians with - - PowerPoint PPT Presentation
Priority #1 Would a national formal network of clinicians with - - PowerPoint PPT Presentation
Priority #1 Would a national formal network of clinicians with expertise and / or a national MDT ( multidisciplinary team meeting ) improve care for patients with rare inherited anaemias ? Priority #2 Can the diagnostic pathways in rare
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Priority #3
Could an understanding of the cellular and molecular processes in red blood cell production lead to new treatments?
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Priority #4
Could the need for iron chelation be reduced? Could current approaches and monitoring be improved?
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Priority #5
How do existing drugs for rare inherited anaemias work? Could this understanding lead to new treatments and new ways of delivering treatments?
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Priority #6
How can the fatigue of severe anaemia be managed (apart from blood transfusions)?
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Priority #7
Would a register of all rare inherited anaemia patients in the UK (including data and samples) improve care?
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Priority #8
How is quality of life affected by rare anaemia and its treatment? How could this be improved for patients?
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Priority #9
What factors indicate that a person with a rare inherited anaemia needs a transfusion, and what is the best regime to maintain safety and quality of life?
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