SC-HEROES: Sickle Cell Health and Education Research on OutcomES
“Despite being one of the most prevalent genetic disorders in the country, sickle cell has historically been under-researched in England. SC-HEROES aims to bridge this gap by studying the life course epidemiology of affected children and offer new perspectives to the Sickle Cell community.”
This study is being led by Galyna Ntamack, Dr Rachel Knowles, Prof Pia Hardelid and Dr Amal Rammah (University College London), and Dr Carl Reynolds (NHS Race and Health Observatory), and was funded by a UCL-Birkbeck MRC DTP iCASE PhD Studentship. The study started in October 2025 and aims to finish in September 2029.
This project was reviewed and approved through ECHILD's data access process. Learn how ECHILD data is kept safe.
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We study how sickle cell disease affects children and young people’s health and education over time, and how early healthcare experiences are linked to later school absence and educational attainment.
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Sickle cell disease is a serious lifelong inherited condition that can cause anaemia, increased infection risk, severe pain and complications such as stroke; children may also experience repeated or prolonged absences from school, but evidence on their longer-term health and education outcomes is limited. The findings will be used to inform improvements in health and education policy and service provision for children and young people living with sickle cell disease.
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We will use linked ECHILD health, education and social care data to identify a national cohort of children with sickle cell disease and comparator groups, then examine mortality, hospital admissions, A&E attendances, school absences and educational attainment. We will also examine important subgroups, including children who have experienced stroke, and whether hospital stays and school absence are associated with educational outcomes.
Find out more
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Why does this matter?
Children with sickle cell disease may experience severe pain, serious complications, hospital stays and repeated school absences, yet there is limited national evidence on how these experiences affect their education over time.
What do we want to find out?
We want to find out whether children and young people with sickle cell disease have higher hospital and A&E use, more school absence and poorer educational attainment than children without sickle cell disease or with other chronic conditions, and how outcomes differ for groups such as children who have had a stroke.
What we will do
We will identify children with sickle cell disease and compare their health and education outcomes with suitable comparison groups. We will examine mortality, hospital admissions, A&E attendances, school absence and educational attainment, and explore whether longer hospital stays and higher absence rates are linked to attainment. The project will also involve people with lived experience and organisations such as the Sickle Cell Society to help make the research relevant to patients, families, services and policy.
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Background and aims
Sickle cell disease (SCD) is an inherited, lifelong blood disorder that can cause anaemia, increased infection risk, severe painful crises and complications including stroke. Around 300 babies are born with SCD each year in the UK, and children and young people with SCD may experience repeated school absence, prolonged illness or hospitalisation, and disrupted learning. Despite good understanding of the pathophysiology of SCD, population-level evidence on longitudinal health and education outcomes remains limited. SC-HEROES aims to address this evidence gap by investigating the life-course impact of SCD on health and education outcomes and generating evidence to inform health and education policy and service provision.
Methods and analysis
A cohort of children and young people with SCD will be defined using ECHILD, alongside comparator cohorts of children unaffected by SCD and/or living with other chronic conditions. Key outcomes will include mortality, hospital admission rates, A&E attendance rates, school absence and educational attainment. Analyses will examine clinically important subgroups, including children who have experienced stroke, and investigate relationships between length of hospital admissions, school absence and educational attainment. Clinical partners will support the definition of coding lists, comparator populations and outcomes, and patient and public involvement will be developed with relevant organisations and people with lived experience of SCD.
ECHILD data used
HES: Admitted Patient Care + Outpatients + ONS Mortality Data + A&E (2003 onwards)
NPD: Key Stage 4 + Spring Census data (2006 onwards)
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