University of Leeds in major study to track impacts of childhood blood disorders

Researchers will investigate the long-term effects of sickle cell disease, beta thalassemia and acute leukaemias by linking records across England and surveying patients, as part of the Haematology Lived Experience and Outcomes (HALO) study.

In the UK, beta thalassemia affects about 1,100 people, and sickle cell disease affects around 17,500 people. Understanding patients’ lived experience into adulthood is vital to improve treatment and to reduce health inequalities, the researchers say.

Kabir Hussain, age 28, from Leeds

Kabir Hussain spent a lot of his childhood in hospital after being diagnosed with rare blood disease beta thalassemia at eight months old. Beta thalassemia negatively affects the function of haemoglobin, a substance in the blood that helps to carry oxygen around the body.

At just ten years old, Kabir had a bone marrow transplant from his father. To prepare for the operation, he needed chemotherapy to kill some of his unhelpful bone marrow that was producing the unhealthy blood cells.

Kabir said: “I had to be immunosuppressed for long periods of time during chemotherapy, so I spent long periods in isolation as a young child. Music saved me during that time, and since then it has helped me heal.

“I was very lucky to get a bone marrow transplant from my dad – other people have to wait for much longer. But I’m not a completely new person. Chemotherapy isn’t a cure and it has serious long-term side effects, especially for children.”

The treatment he received inspired him to pursue his own career in healthcare, and now he is a registered adult nurse in an endoscopy unit at a local hospital. He hopes that speaking out about his illness will encourage others to take part in the survey.

Kabir added: “Now there are psychologists for children going through what I went through, but when I had chemo there was barely any emotional support. Being from a family who didn’t talk much about these things, I struggled. Even though I’m a nurse and I work in a hospital, to this day I hate going into hospital myself for treatment.”

Kabir says he has heard multiple stories from fellow patients who have consulted GPs who haven’t even heard of beta thalassemia, so he hopes this will raise awareness among the medical community too.

“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. Taking part in any research study can be daunting, but the HALO study might benefit your future. If you’re suffering now, without research it will never end. Research leads to treatments, and those lead to cures.

“I want us to tell more stories about seriously ill children who go on to live full, happy lives thanks to treatment and support and the HALO study will help us do this,” Kabir said.

Importance of research

Both beta thalassemia and sickle cell disease affect red blood cells, causing anaemia and making it harder for oxygen to be carried around the body, which results in chronic fatigue. Sickle cell disease can cause severe pain, stroke and increased risk of infection, while beta thalassemia causes poor growth and fatigue. Both are chronic disorders associated with a limited life expectancy and may be managed into adulthood with strategies like regular blood transfusion or stem cell transplants.

Acute leukaemias are aggressive blood cancers of the white blood cells that are mainly treated by chemotherapy or bone marrow transplants. They can cause emergency blast crises where patients feel very unwell, with symptoms such as seizures and vomiting, due to high concentrations of white blood cells in the blood.

There has been limited research into the long-term implications of these diagnoses so far, but the researchers hope the information gleaned from the HALO study will inform those affected, as well as health professionals, in making the best choices about their care, and improve quality of life. The first-of-its-kind study is funded by a £680,000 grant from Leeds Hospitals Charity and co-led by academics and clinicians from the University of Leeds and Leeds Teaching Hospitals NHS Trust, which includes Leeds Children’s Hospital.

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.”

Solome Mealin, age 45, from Burmantofts

Solome Mealin, a PhD student at Leeds Beckett University and sickle cell disease patient, said: “The stigma in this country is very different. As fewer people have sickle cell here, not all health professionals understand. In the past, I have been in agony, feeling like every breath is my last one, and some doctors have asked if it’s really that bad, thinking I’m there for a pain relief addiction.

“Sometimes you feel like a double decker bus is crushing you, sometimes it feels like someone is putting a nail through your bones and sometimes it feels like a burning pain.”

Solome added: “That’s why it’s so important that we share our experiences in this research project – we need to be part of research that will raise awareness of the lived experiences of people with blood disorders.”

Solome’s regular treatment involves a blood transfusion – where a donor’s healthy red blood cells replace some of her sickle cells – at St James’s University Hospital in Leeds.

She says: “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.”

"Golden opportunity"

HALO is part of Child Health Outcomes Research at Leeds (CHORAL) - a partnership harnessing the expertise of the University of Leeds and Leeds Teaching Hospitals NHS Trust to improve outcomes for children, funded by Leeds Hospitals Charity.

Beta thalassemia and sickle cell disorder are both inherited diseases that originated centuries ago as genetic mutations responding to malaria. Sickle cell disease mainly affects people from African and African-Caribbean backgrounds, and beta thalassemia is usually found in people of Mediterranean, South Asian, Southeast Asian and Middle Eastern heritage.

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 use routinely collected information on people with these diagnoses using NHS sources, national clinical registries, educational and social care data sources. The survey will open in January 2026, and 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. North-West (NW): Manchester & Liverpool. Other collaborators include Sickle Cell Society, UK Thalassemia Society, Leeds Hospitals Charity and the National Institute of Health and Care Research (NIHR) Leeds Biomedical Research Centre (BRC).