Epidermolysis Bullosa: Research

(asked on 2nd September 2022) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if the Government will provide £50 million of funding to enable DEBRA to increase research into gene, protein, and cell therapies which offer the potential to (a) correct the molecular and clinical phenotype and (b) identify cures for people affected by Epidermolysis Bullosa.


Answered by
James Morris Portrait
James Morris
This question was answered on 7th September 2022

NHS England commissions a national epidermolysis bullosa (EB) service to provide diagnosis and assessment of infants, children, adolescents and adults with suspected or known EB, with treatment and long-term support. NHS England is aware that a number of innovative treatments for EB are either in trials or being considered by the National Institute for Health and Care Excellence (NICE). If any of these treatments are given a positive recommendation by NICE, NHS England will ensure that service provision is in place to deliver these treatments.

The Department funds research through the National Institute for Health and Care Research (NIHR). While the usual practice of the NIHR 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 therapies for rare conditions such as EB. These applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. In the past five years, the NIHR has funded two studies into EB with a total award value of £3,022,759 and supported the delivery of over 25 studies via the NIHR’s infrastructure.

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