Recommendation IBI-9f: National Haemophilia Database Support
From Infected Blood Inquiry Final Report, published 20 May 2024.
Recommendation
That the National Haemophilia Database, run by the UKHCDO, merits the support of additional central funding.
In brief (written by this site)
In an April 2026 parliamentary answer, Parliamentary Under-Secretary of State at the Department of Health and Social Care Dr Zubir Ahmed stated that NHS England provides approximately 40% of the National Haemophilia Database's annual costs and continues to work with the United Kingdom Haemophilia Centres Doctors' Organisation to assess requirements for increased funding (Dr Zubir Ahmed, Apr 2026). The Minister noted in April 2026 that while stakeholders agreed the registry remains immensely valuable for clinical care, further progress is subject to additional funding that "has not yet been identified" (Dr Zubir Ahmed, Apr 2026).
Sources
AI-generated summary of the record on this page, checked by a second model and automatic checks, 26 Sep 2026. The record below is the sources' own words.
Government response
Recommendation 9f: NHS England currently provides ‘central’ funding of approximately 40% of the total annual cost for running the National Haemophilia Database. A task and finish group relating to the database has been established, reporting into the overarching recommendation 9 expert group.
Delivery
Department of Health and Social Care says in progress (16 April 2026)
Finally, for 9f, NHS England currently provides ‘central’ funding of approximately 40% of the total annual cost for running the National Haemophilia Database. A task and finish group relating to the database has been established, reporting into the overarching recommendation 9 expert group. As of February 2026, stakeholders involved in the recommendation 9f working group are in agreement that the registry has been and remains immensely valuable in supporting the provision of clinical care. NHS England continues to work with the United Kingdom Haemophilia Centres Doctors' Organisation to understand the requirement for increased funding. Further progress on implementing recommendation 9 is subject to additional funding, and this has not yet been identified.
From: Infected Blood Inquiry (written question 124052), Dr Zubir Ahmed
Responsible bodies
Themes and tags
Who has spoken
- UK Government
Response - Department of Health and Social Care
Delivery statement