A new blog post by UCL doctoral researcher Galyna Ntamack explores how linking health and school records can help us better understand the real-world challenges faced by children and young people with sickle cell disease (SCD).
Why This Study Matters
Sickle cell disease is one of the most common genetic conditions in England, affecting around 300 newborns every year. Yet, compared to other chronic conditions like cystic fibrosis, it has historically received far less research funding and attention.
By combining health and education data through ECHILD, this research looks beyond medical symptoms to see how the condition impacts a child's entire life—including their education, daily experiences, and long-term future. The goal is to turn data into practical changes that improve care, support students, and tackle health inequalities.
Galyna explains:
“Through this work, I hope to produce actionable evidence and recommendations that can contribute to a future national agenda for improving diagnostic equity for SCD patients. Addressing these differences is essential if every child is to receive the timely attention and quality of care they need.”
Read the full blog with Galyna’s reflections and insights in the NHS Race and Health Observatory article.