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The Importance of Using Patient Experience to Guide Research

victoriaforsterby Vicky Forster PhD, Survivor


2016 has been a big year for me. I’m a research scientist from the UK and this year I published my first scientific paper from an idea which was of my own design.  It also marks 22 years since I was diagnosed with childhood acute lymphoblastic leukaemia (ALL).  Two separate bits of information, which are uniquely linked. My treatment regimen 22 years ago was similar to protocols that children undergo across the world even now. Although the cure rates for childhood ALL have increased dramatically in the last 22 years, the chemotherapy drugs used remain very similar, as do the side effects from treatment. I remember hating painful asparaginase injections and horrible mood swings and pica caused by steroids, but the worst side effect I personally experienced was after methotrexate.


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