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New guidance for sickle cell and thalassaemia screening
Revised standards for the UK sickle cell and thalassaemia screening programme, which has been running for ten years, have been released.
Both sickle cell disease (also known as sickle cell anaemia) and thalassaemia are groups of related recessive genetic disorders that affect haemoglobin, the molecule in red blood cells that delivers oxygen.
The second edition of the standards, which applies to antenatal and newborn screening elements, includes new material on how the programmes are linked as well as on objectives, the evidence base for standards and performance indicators.
Of note, offering screening and counselling to the fathers of affected children has been identified as an area requiring more emphasis; conversely, the need to address issues arising from non-paternity was also highlighted. Parents of babies identified as carriers of the diseases (as opposed to affected by the diseases) are to receive more information.
The updated standards will take effect in the UK National Health Service (NHS) from April 2012.