Children's Academic and Health Results for Sickle Cell Disease in England (CARES)
We aim to investigate the health outcomes, health service utilisation, and educational outcomes of all children with Sickle Cell Disease in England.
Sickle cell disease (SCD) is one of the most common genetic diseases in the UK affecting approximately 17,500 individuals and almost 300 babies born annually.
Why is this study needed?
SCD is associated with recurrent episodes of acute pain and complications, such as stroke and progressive organ damage, leading to frequent hospitalisations. Children’s school participation and academic attainment may be impacted by SCD-related pain, fatigue, and neurological complications.
SCD presents predominantly in people of sub-Saharan African, Caribbean, Middle Eastern, or Eastern Mediterranean descent. SCD patients too often face substandard care and negative attitudes due to stereotyping, structural racism, and inadequate awareness of SCD in the NHS.
Children with SCD are underrepresented in research. A comprehensive review of health consequences of SCD from early childhood to adulthood in England is lacking and there is limited data on health and educational outcomes at a national level. Furthermore, an updated perspective on healthcare utilisation and improved management strategies for general and specialist care for children with SCD is needed.
Therefore, high-quality research is needed to provide insight into the health outcomes, healthcare utilisation, and educational outcomes of children with SCD at a national level.
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