Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether his Department plans to provide funding for research into treatments for epidermolysis bullosa in 2023.

The Department funds research mainly through the National Institute for Health and Care Research (NIHR). The usual practice of the NIHR and other research funders is not to ring-fence funds for expenditure on particular topics. The NIHR welcomes funding applications for research into any aspect of health or care research, including research into treatments, and repurposing of drugs for any condition, such as Epidermolysis Bullosa (EB). These funding 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.

Since 2019, the NIHR has funded three studies into EB with a total award value of over £4 million, and supported the delivery of more than 25 studies via the NIHR’s infrastructure.

The multi-agency Medicines Repurposing Programme identifies and progresses opportunities to use existing medicines in ways not included in the current licence. The work includes horizon scanning for trials in rare diseases such as EB. While NHS England is not aware of the repurposing of any drugs for EB, NHS England is working with National Institute for Health and Care Excellence on the evaluation of two products for EB, birch bark extract for skin wounds and the gene therapy Beremagene geperpavec.

NHS England commissions a national service for patients with EB from four expert centres. The service is commissioned in line with a published service specification and aims to provide diagnosis and assessment of infants, children, adolescents and adults with suspected or known EB along with treatment and long-term support.