Some adults with SCD develop long-term complications. Current treatments for SCD are supportive care with antibiotics, vitamins and vaccination; blood transfusion; or Hydroxycarbamide medicine. We don’t know which adults will develop sickle-related complications or the long term outcomes of each available treatment. This limits the advice we can give you on long-term outcome including survival and treatment options. As new treatments become available, we need to be able to advise you about whether the new treatments will be better than current treatments.

We are asking your permission to collect anonymised information including your previous medical history and results of investigations. We will update this once a year for five years as part of your annual review, and ask you to complete an annual questionnaire about your experience of SCD, including pain, sleep, tiredness, mood, memory and your ability to carry out daily tasks. We will inform your GP that you are taking part in the study.