Abstract
The history of newborn screening (NBS) for sickle cell disease (SCD) in Europe goes back almost 40 years. However, most European countries have not established it to date. The European screening map is surprisingly heterogenous. The first countries to introduce sickle cell screening on a national scale were France and England. The French West Indies started to screen their newborns for SCD as early as 1983/84. To this day, all countries of the United Kingdom of Great Britain and Northern Ireland have added SCD as a target disease to their NBS programs. The Netherlands, Spain and Malta also have national programs. Belgium screens regionally in the Brussels and Liège regions, Ireland has been running a pilot for many years that has become quasi-official. However, the Belgian and Irish programs are not publicly funded. Italy and Germany have completed several pilot studies but are still in the preparatory phase of national NBS programs for SCD, although both countries have well-established concepts for metabolic and endocrine disorders. This article will give a brief overview of the situation in Europe and put a focus on the programs of the two pioneers of the continent, England and France.
Highlights
Political commitment was achieved via the National Health Service (NHS) plan in 2000 [4] and this led to the formation of a small team to plan and drive implementation of a linked newborn and antenatal screening program
The paper concludes that the screening program accurately identifies babies with sickle cell disease (SCD), enrolment into care is timely but does not meet program standards, and despite mortality being low deaths still occur from invasive pneumococcal disease with adherence to antibiotics remaining important
Testing for SCD is firmly embedded in newborn blood spot screening which is assessed as a complete pathway rather than individual components
Summary
Newborn screening (NBS) for sickle cell disease (SCD) was implemented in England between 2002 and 2005. Pockets of NBS had been implemented locally in some high prevalence areas in the 1970s but these were not systematic and resulted in inequitable policies throughout the country These factors led to a major review by a Health Technology Assessment [3] working party which formed the basis for subsequent policy decisions. Political commitment was achieved via the National Health Service (NHS) plan in 2000 [4] and this led to the formation of a small team to plan and drive implementation of a linked newborn and antenatal screening program. At this time, despite political commitment there were no policies and no financial resources had been allocated. Scotland and Northern Ireland broadly follow the English policy whilst Wales implemented screening much later and has its own strategy [5]
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