UK enquiry shows lack of knowledge about complications in patients with sickle cell disease

BMJ 2008; 336 doi: (Published 22 May 2008) Cite this as: BMJ 2008;336:1152
  1. Susan Mayor
  1. 1London

    UK sickle cell specialists are calling for a database of patients with sickle cell disease and thalassaemia to be set up after the first national survey of deaths caused by these conditions showed that many patients did not receive care based on best practice.

    Cause of death also needs to be better evaluated, as the results showed an unexpectedly high number of cases where the precise cause of death was unknown.

    The enquiry, coordinated by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD), asked all hospitals and primary care trusts in the United Kingdom to provide information, including case notes, for patients who had died from haemoglobinopathies over a two year period from 1 January 2005 to 31 December 2006.

    Expert reviewers assessed the ongoing care of …

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