Abstract
To evaluate England's NHS newborn sickle cell screening programme performance in children up to the age of 5 years. Cohort of resident infants with sickle cell disease (SCD) born between 1 September 2010 and 31 August 2015 and followed until August 2016. 1317 infants with SCD were notified to the study from all centres in England and 1313 (99%) were followed up. Early enrolment in clinical follow-up, parental education and routine penicillin prophylaxis. Age seen by a specialist clinician, age at prescription of penicillin prophylaxis and mortality. All but two resident cases of SCD were identified through screening; one baby was enrolled in care after prenatal diagnosis; one baby whose parents refused newborn screening presented symptomatically. There were 1054/1313 (80.3%, 95% CI 78% to 82.4%) SCD cases seen by a specialist by 3 months of age and 1273/1313 (97%, 95% CI 95.9% to 97.8%) by 6 months. The percentage seen by 3 months increased from 77% in 2010 to 85.4% in 2015. 1038/1292 (80.3%, 95% CI 78.1% to 82.5%) were prescribed penicillin by 3 months of age and 1257/1292 (97.3%, 95% CI 96.3% to 98.1%) by 6 months. There were three SCD deaths <5 years caused by invasive pneumococcal disease (IPD) sensitive to penicillin. The ...Continue Reading
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