University of Leeds launches landmark HALO study on lifelong impact of childhood blood disorders

Backed by a £680,000 grant from Leeds Hospitals Charity, the study is jointly led by academics and clinicians from the University of Leeds and Leeds Teaching Hospitals NHS Trust

A major first-of-its-kind research initiative led by University of Leeds is set to examine how rare blood disorders diagnosed in childhood continue to shape health, education, employment, and quality of life into adulthood.

The Haematology Lived Experience and Outcomes (HALO) study will focus on sickle cell disease, beta thalassemia, and acute leukaemias by linking nationwide health records across England with detailed patient surveys. 

Backed by a £680,000 grant from Leeds Hospitals Charity, the study is jointly led by academics and clinicians from the University of Leeds and Leeds Teaching Hospitals NHS Trust. Researchers aim to address a major evidence gap around the long-term personal and societal consequences of these diagnoses, while also identifying unmet needs and persistent health inequalities. 

In the UK, around 17,500 people live with sickle cell disease, while beta thalassemia affects roughly 1,100 people. Both inherited blood disorders affect red blood cells, causing anaemia, chronic fatigue, and, in severe cases, stroke, infections, poor growth, and reduced life expectancy. Acute leukaemias, by contrast, are aggressive white blood cell cancers usually treated with chemotherapy or bone marrow transplantation. 

A key strength of HALO is its patient lived-experience lens. Voices like sickle cell patient and researcher Solome Mealin and beta thalassemia survivor Kabir Hussain are central to the study’s design, helping researchers better understand stigma, care gaps, and the real-world burden of these conditions. Their experiences are expected to guide future NHS support pathways and improve awareness among clinicians. 

Professor Richard Feltbower, who is co-leading the project, said the study will provide families with critical evidence on life expectancy, long-term health risks, and impacts on education and employment prospects. Professor Adam Glaser, Director of CHORAL, described HALO as a “golden opportunity” to close a longstanding knowledge gap and enable more holistic care. 

The survey component opened in January 2026, while the data-linkage work began in Autumn 2025. HALO is part of Child Health Outcomes Research at Leeds (CHORAL) and works with partners including the Sickle Cell Society, UK Thalassaemia Society, NIHR Leeds Biomedical Research Centre, and haemoglobinopathy coordinating centres across northern England. 

The findings could become highly influential in shaping future NHS care pathways, survivorship support, and policy interventions for children diagnosed with chronic blood disorders—well beyond childhood and into adult life.