The lifelong effects of rare blood disorder diagnoses in childhood are being analysed in a first-of-its-kind study led by the University of Leeds.
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.
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.
Read the full press release here.
