COVID-19 in patients with inherited anaemias in England
Research type
Research Study
Full title
Natural history and risk factors for COVID-19 disease in patients with haemoglobinopathies and rare inherited anaemias in England - An observational registry study.
IRAS ID
290047
Contact name
Josu de la Fuente
Contact email
Sponsor organisation
Imperial College London Joint Research Compliance Office
Duration of Study in the UK
1 years, 5 months, 1 days
Research summary
In the context of the novel pandemic of COVID-19 (SARS-CoV-2 infection), risk assessment and treatment decisions of newly infected patients rely on evolving data as it emerges, often changing with data accumulation. Patients with inherited anaemias (including sickle cell disease (SCD), thalassaemia, Diamond Blackfan anaemia (DBA), congenital dyserythropoietic anaemia (CDA), sideroblastic anaemia, pyruvate kinase deficiency) are a group with known vulnerability to infection. This can result from their condition (for instance functional asplenia in SCD), their treatment (splenectomy in haemolytic anaemias) or complications of treatment (iron overload or use of chelators in transfusion dependence). In addition, ethnicity has been reported as a possible risk factor in disease severity (Pareek 2020), and this patient group is overwhelmingly constituted of black and minority ethnic (BAME) groups. It is therefore important to determine the incidence and complications of COVID-19 in this group of patients compared to the general population. This rare disease patient population in the United Kingdom consists of ~14,000 individuals with SCD [Dormandy 2017], most of whom live in London, an estimated 800 patients with transfusion-dependent thalassaemia, about 200 with DBA and fewer with other diagnoses.
This study aims to collect real-time comprehensive medical information of these patients with proven or suspected COVID-19, and also those who have recovered or perished from this disease, via the the national clinical network for the care of these patients formed in 2020 by NHS-E and constituted of the National Haemoglobinopathy Panel and the 10 haemoglobinopathy coordinating centres (HCC) for sickle cell disease and 4 HCC for thalassaemia and rare anemias, allowing comprehensive collection of data and study in England. The feasibility of this approach, likely to provide the only comprehensive national dataset worldwide, minimizing the chances of bias is supported by the preliminary the recent publication of the network (Paul Telfer et al, https://doi.org/10.3324/haematol.2020.259440).REC name
Wales REC 7
REC reference
21/WA/0055
Date of REC Opinion
2 Mar 2021
REC opinion
Favourable Opinion