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.<\/p>
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\u2019s infrastructure.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4423", "label" : {"_value" : "Biography information for Will Quince"} } , "answeringMemberConstituency" : {"_value" : "Colchester"} , "answeringMemberPrinted" : {"_value" : "Will Quince"} , "dateOfAnswer" : {"_value" : "2022-09-21", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2022-09-21T15:42:28.22Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2022-09-02", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Epidermolysis Bullosa: Health Services and Research"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health and Social Care, what steps he is taking to support patients of Epidermolysis Bullosa on the NHS in England; and what assessment he has made of the potential merits of increasing funding into research on that condition.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4511", "label" : {"_value" : "Biography information for Dr Rupa Huq"} } , "tablingMemberConstituency" : {"_value" : "Ealing Central and Acton"} , "tablingMemberPrinted" : [{"_value" : "Dr Rupa Huq"} ], "uin" : "45330"} ], "itemsPerPage" : 10, "page" : 0, "startIndex" : 1, "totalResults" : 1, "type" : ["http://purl.org/linked-data/api/vocab#ListEndpoint", "http://purl.org/linked-data/api/vocab#Page"]} }