Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what assessment he has made of the adequacy of research into sickle cell disease in meeting the needs of people with that disease.

The Department has made no specific assessment of this.

The National Institute for Health Research (NIHR) is investing £15.1 million in four Blood and Transplant Research Units (BTRUs) that support the future needs of donors, patients and NHS Blood and Transplant (NHSBT). Each BTRU is a partnership between a university and NHSBT. One BTRU is based at the University of Bristol and is carrying out research to aid the development of new blood products for treatment of patients with rare blood types and those needing regular transfusions including patients with sickle cell disease (SCD).

The NIHR has also recently funded a £0.3 million study on improvement of pain and quality of life in patients with SCD with nocturnal oxygen therapy or auto-adjusting continuous positive airways pressure. A current £0.5 million NIHR study is examining young adult patients’ experiences of transitions from paediatric to adult services for SCD, and the NIHR is currently seeking to commission research on whether haematopoietic stem cell transplantation in adults with severe SCD is cost effective and improves quality of life.

The Department’s NIHR welcomes funding applications for research into any aspect of human health, including SCD. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.