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BSH 2024 | Morbidity and mortality data from the UK National Haemoglobinopathy Registry
Farrukh Shah, MBBS, FRCP, FRCPath, MD, University College London Hospitals, London, UK, discusses the morbidity and mortality data from the National Haemoglobinopathy Registry (NHR), a database of patients with red cell disorders living in the UK. As the data is entered into the registry voluntarily, it does not accurately represent the outcomes of patients in the UK; however, it does indicate the considerable mortality rate seen in patients with thalassemia. Morbidity data for thalassemia is scarce compared to data reported for patients with sickle cell disease (SCD), and Dr Shah highlights the need for clinicians and data managers to improve reporting practices. This interview took place at the 64th Annual Scientific Meeting of the British Society for Haematology (BSH) Congress in Liverpool, UK.
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Disclosures
Haemoglobinopathy work: National Haemoglobinopathy Registry (NHR); Advisory board: Bristol Myers Squibb, Novartis, Vertex; Lecture Fees: Bristol Myers Squibb, Novartis, Chesi, Vertex; Safety Monitoring Committee: Agios, Pharmacosmos.
