April 9: Researchers will examine the long-term effects of sickle cell disease, beta thalassemia, and acute leukaemias by linking health records across England and conducting patient surveys as part of the Haematology Lived Experience and Outcomes (HALO) study.
In the UK, beta thalassemia affects around 1,100 people, while approximately 17,500 people live with sickle cell disease. Researchers emphasise that understanding patients’ lived experiences into adulthood is crucial for improving treatment approaches and addressing health inequalities.
Both beta thalassemia and sickle cell disease impact red blood cells, leading to anaemia and reduced oxygen circulation in the body, which results in chronic fatigue. Sickle cell disease can also cause severe pain, stroke, and a higher risk of infections, while beta thalassemia is associated with poor growth and fatigue. Both are chronic conditions linked to reduced life expectancy but can be managed into adulthood through treatments such as regular blood transfusions or stem cell transplants.
Acute leukaemias are aggressive cancers of the white blood cells, primarily treated with chemotherapy or bone marrow transplants. They can lead to emergency blast crises, during which patients may experience severe symptoms such as seizures and vomiting due to very high levels of white blood cells in the bloodstream.
“The stigma in this country is very different,” said Solome Mealin, a sickle cell disease patient. “As fewer people here are affected by the condition, not all healthcare professionals fully understand it.”
Research into the long-term implications of these diagnoses has so far been limited, but researchers hope that insights from the HALO study will help both patients and healthcare professionals make more informed decisions about care, ultimately improving quality of life; the first-of-its-kind study is supported by a £680,000 grant from Leeds Hospitals Charity and is co-led by academics and clinicians from the University of Leeds and Leeds Teaching Hospitals NHS Trust, including Leeds Children’s Hospital.
Solome Mealin, a PhD student at Leeds Beckett University and a sickle cell disease patient, said
“Stigma in the country remains markedly different, with limited awareness among healthcare professionals due to the lower prevalence of the condition; I can recall experiencing extreme pain, at times feeling as though every breath could be my last. While some doctors questioned the severity of my condition, assuming I was seeking pain relief for dependency, and described the pain as ranging from a crushing weight to sharp, nail-like sensations in my bones or an intense burning feeling, adding that this is why it is crucial for patients to share their experiences through research to raise awareness and better reflect the lived realities of people with blood disorders.”
Solome’s ongoing treatment includes regular blood transfusions at St James’s University Hospital in Leeds, where healthy red blood cells from a donor are used to replace some of her sickle cells. She said, “I love that hospital because they understand me, and I understand them. When you call they listen, they understand and they encourage you to come in when you need help.”
HALO is part of Child Health Outcomes Research at Leeds (CHORAL). A partnership that brings together the expertise of the University of Leeds and Leeds Teaching Hospitals NHS Trust to improve outcomes for children, funded by Leeds Hospitals Charity.
Richard Feltbower, Professor of Paediatric Epidemiology at the University of Leeds and Deputy Director of CHORAL, is co-leading the study. Professor Feltbower said,
“This study will shine a light on the patient experiences of those with sickle cell disorder and beta thalassemia and compare them to acute leukaemia survivors to identify how the NHS can best support these individuals. It will also harness whole population data from existing national clinical registries to provide key information for families on life expectancy, the risks of long-term health problems and how their education and employment prospects are affected by these conditions.”
Kabir Hussain, beta thalassemia patient said,
“In my community, we don’t always like talking about these things but it’s really important. Being part of a research study can be daunting, but the HALO study might benefit your future.”
Beta thalassemia and sickle cell disorder are both inherited conditions that originated centuries ago as genetic mutations in response to malaria. Sickle cell disease primarily affects individuals of African and African-Caribbean descent, while beta thalassemia is more commonly found among people of Mediterranean, South Asian, Southeast Asian, and Middle Eastern heritage.
Kabir Hussain, a nurse from Leeds who underwent a bone marrow transplant and chemotherapy for beta thalassemia at the age of 10, said, “I hope that if I speak up, it will encourage others to take part in the survey. In my community, we don’t always like talking about these things but it’s really important. Being part of a research study can be daunting, but the HALO study might benefit your future. If you’re suffering now, without research it will never end.”
Adam Glaser is Professor of Paediatric Oncology and Late Effects and Director of CHORAL at the University of Leeds and Leeds Teaching Hospitals NHS Trust. Professor Glaser said,
“So little is known about the long-term personal and societal impact of living with sickle cell disease, beta thalassaemia or acute leukaemia diagnosed in childhood. The HALO study gives us a golden opportunity to address this knowledge gap, thereby enabling delivery of optimal holistic care and support leading to enhanced quality of life of affected individuals.”
Edward Ziff OBE, former Chair of Trustees at Leeds Hospitals Charity, made a significant contribution to the HALO study. He says,
“I was personally motivated to support Beki James and this project because my son Jacob was diagnosed with leukaemia as a teenager and received exceptional care at Leeds, and he is now thriving. I am delighted to hear that the HALO project has now launched, which has the potential to transform outcomes for children living with rare blood disorders like leukaemia. I hope that this groundbreaking research gives more children like my son the opportunity to live the best possible life into adulthood.”
HALO will utilise routinely collected data on individuals with these diagnoses from NHS sources, national clinical registries, as well as educational and social care datasets. The survey will open in January 2026, while the data linkage component began in Autumn 2025. It is being delivered in partnership with Haemoglobinopathy Co-ordinating Centres (HCC) North-East and Yorkshire (NEY) – Leeds, Newcastle, Bradford & Sheffield, and North-West (NW): Manchester & Liverpool. Other collaborators include the Sickle Cell Society, the UK Thalassemia Society, Leeds Hospitals Charity, and the National Institute of Health and Care Research (NIHR) Leeds Biomedical Research Centre (BRC).
