Chronic, rare, & complex conditions
Education and longer-term health outcomes for childhood cancer survivors
The study will create a longitudinal, population-level database of hospital and education records. We aim to quantify the difference in academic attainment and school support (including Special Educational Needs) up to age 16, and hospitalisations and mortality into adulthood, between childhood cancer survivors and healthy peers.
The study is being led by Dr Selina Nath and Professor Katie Harron, and is funded by CRUK and Children with Cancer.
Childhood outcomes in children with Hirschsprung disease
The study will use ECHILD to explore health and educational outcomes across childhood in children with a rare congenital condition called Hirschsprung disease. We aim to provide families with better information about the challenges that children with this condition might face as they grow up, and to inform development of new treatments.
The study is being led by Professor Katie Harron, Dr Ben Jevans and Dr Conor McCann (UCL) and was funded by NIHR.
Understanding the consequences of congenital cytomegalovirus infection (CMV): a feasibility study
The aim of this study is to inform the design of a future research project to address questions about child health outcomes of congenital cytomegalovirus (cCMV) infection in England, including the strengths and limitations of routine data sources for ascertaining hearing loss and neurodevelopmental sequelae.
The study is being led by Dr Heather Bailey (UCL) and is funded by the Academy of Medical Sciences.
Health and education outcomes for children with chronic liver disease
This study aims to evaluate healthcare and educational outcomes (including need for learning support) for children with chronic liver disease, to generate evidence to inform development of guidance on long-term developmental follow-up.
The study is being led by Qing Zhang, Professor Katie Harron and Dr Marianne Samyn and is funded by the BRC Non-Clinical PhD scheme.
Variation in special educational needs provision for children with Down Syndrome and associations with emergency use of hospital care
This study aims to identify inequalities in the provision of health, education, and social care services for children with Down’s syndrome, and examine how those inequalities affect their long-term health and education outcomes.
This study is led by Julia Shumway and Prof Ruth Gilbert (UCL) and is funded by the NIHR Great Ormond Street Hospital Biomedical Research Centre.
Completed Studies
Assessing the impact of the COVID-19 pandemic on planned hospital attendances in vulnerable adolescents
This study examined changes in planned hospital care during the pandemic's first nine months. It compared planned hospital attendances in secondary school pupils recorded as receiving Special Educational Needs and Disability (SEND) support or children’s social care (CSC) services, with their peers.
The study is completed. It was led by Prof Ruth Gilbert and was funded by DHSC through the NIHR Children and Families Policy Research Unit.
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Assessing the impact of the COVID-19 pandemic on cleft lip and/or palate repair in infants
This study examined the impact of the pandemic on the timing of first primary cleft lip and/or palate surgeries among children born with an oral cleft during and shortly before the pandemic. It also explored the relationship between the timing of surgery and both short- and longer-term educational outcomes.
The study is completed. It was led by Prof Ruth Gilbert and was funded by ADRUK.
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