Patients Page
This section of the UKHCDO website is dedicated to Haemophilia patients and their families and aims to provide comprehensive and useful information associated with Haemophilia, bleeding disorders and the National Haemophilia Database (NHD).
These documents are currently available for viewing & download
UKHCDO Statement on the Infected Blood Inquiry Report
Following publication of the final report of the Infected Blood Inquiry, the UK Haemophilia Centre Doctors’ Organisation (UKHCDO) offers its deepest sympathies to everyone affected by these tragic events and acknowledges the harm done to people due to treatment for their bleeding disorders in the UK and across the world.
The UKHCDO acknowledges its role within the wider UK health care system that contributed to the events investigated by the Inquiry and sincerely apologises for this. We accept there is much we can learn from the report and will analyse it in detail over the coming weeks to identify the actions we need to take.
As our work and the repercussions of the Inquiry continue, we will provide further timely updates so that the UKHCDO and its members can work with others to support the implementation of the Inquiry’s recommendations. The UKHCDO will also assist with the compensation scheme, in whatever way it can, as details of the scheme are published.
For further information about the Inquiry and its report, please click here to go to the Inquiry’s own comprehensive website.
The NHS has set up a support service available here for people historically infected with hepatitis C and/or HIV from NHS blood or blood products, as well as their families, civil or long-term partners after the death of someone infected.
UKHCDO members who would like further support from UKHCDO in connection with the Inquiry should email support@ukhcdo.org
Patient Information and Consent Changes
Change of research registry name
Following consultation with patients and the Haemophilia Society, retaining the research registry for haemophilia would not be inclusive of all individuals who have different bleeding disorders to that of haemophilia. Based on this feedback, we believe it is the right time to change the name of the research registry. We have therefore changed it to the UK Bleeding Disorders Research Registry (previously known as UK National Haemophilia Research Registry).
Renewal of research registry ethical approval
In November 2025, we were successful in applying the Health Research Authority Research Ethics Committee (REC) to renew our ethical approval to undertake research. The UK Bleeding Disorders Research Registry (previously known as UK National Haemophilia Research Registry) has had its ethical approval to undertake research renewed for a further 5 years until 21 November 2029 (IRAS Project ID 339857). UKHCDO is the data controller and custodian for the data in both the National Haemophilia Database and for the UK Bleeding Disorders Research Registry (UK-BDRR).
Legal basis – all UK regions
As part of our application for renewal, the HRA agreed that for England and Wales, we could have a dual legal basis for collecting, holding, processing and analysing individuals’ data for research purposes.
We agreed a strategic roadmap to roll out a new explicit consent process for all Haemophilia Centres across all UK regions (England, Wales, Scotland and Northern Ireland) to undertake with all individuals with bleeding disorders who are in receipt of treatment at their centre. This has now been implemented and will continue for at least the next five years.
In December 2025, we were successful in applying to the Health Research Authority Confidentiality Advisory Group for Section 251 support in England and Wales. This in effect permits the NHD to collect, hold, process and analyse confidential data for both research and non-research purposes and to transfer confidential data between parties without there being a breach of our common law duty of confidentiality. We applied for this for the following reasons:
- If an individual with a bleeding disorder is lost to follow up, or
- If any individual with a bleeding disorder recorded in the database dies, we can be notified of their deaths and the details such as the date and cause, without obtaining informed consent. It is an NHS Digital requirement that we have this support when applying for mortality data.
For Scotland, in August 2025 the Scottish Public Benefit and Privacy Panel for Health and Social Care (PBPP) gave approval for Haemophilia Centres in Scotland to roll out the new consent process to use as the legal basis to share data with the NHD to enable it to collect, store and process confidential data for research and non-research purposes. In September 2021, PBPP also gave permission for processing data without written consent from the individuals concerned where there are practical difficulties in obtaining written informed consent, for example, from people lost to follow up or deceased. This dual legal basis will continue in Scotland.
For Northern Ireland, consent will continue to be obtained from patients. We have a data sharing agreement in place, which is reviewed and renewed by the Strategic Planning and Performance Group (SPPG, formerly known as the Health and Social Care Board), which is part of Health and Social Care Northern Ireland.
We have drafted new patient information which have been consulted on with the Health Research Authority, NHS Digital, NHS Scotland, Northern Ireland Privacy Advisory Committee, HSC Business Services Organisation (NI), UKHCDO members and patient representatives. During this process we have simplified the amount of information where it has been possible to do so.
The following leaflets cover all England, Scotland and Wales regions only.
UK Bleeding Disorder Adult Information Leaflet and Consent Form – This is the digital version 2.0 June 2025 leaflet that can be used in Haemophilia centres for all England, Scotland and Wales.
UK Bleeding Disorder Child (6-10 years) Information Leaflet and Assent – This is the digital version 2.0 September 2024 leaflet that can be used in Haemophilia centres for England, Scotland and Wales.
UK Bleeding Disorder Young People (11-15 years) Information Leaflet and Assent – This is the digital version 2.0 September 2024 leaflet that can be used in Haemophilia centres for England, Scotland and Wales.
UK Bleeding Disorder Young People (11-15 years) Information Leaflet and Consent Form for Those Able to Give Consent – This is the digital version 2.0 September 2024 leaflet which can be used in Haemophilia centres for England, Scotland and Wales.
UK Bleeding Disorder Parent/Guardian Information Leaflet and Consent Form – This is the digital version 2.0 September 2024 leaflet that can be used in Haemophilia centres for England, Scotland and Wales.
Data Opt-Out Form – This form covers all UK regions (England, Wales, Scotland and Northern Ireland). We need to make sure we are explicit in providing a process for patients to opt-out of their data being used for research purposes. The opt-out form will be made available to all Haemophilia Centres. Patients will also be able to contact the NHD directly.
The following leaflets cover the Northern Ireland region only.
UK Bleeding Disorder Adult Information Leaflet and Consent Form – This is the digital version 2.0 June 2025 consent form that can be used in Haemophilia centres for Northern Ireland.
UK Bleeding Disorder Child (6-10 years) Information Leaflet and Assent – This is the digital version 4.0 July 2025 leaflet that can be used in Haemophilia centres for Northern Ireland.
UK Bleeding Disorder Young People (11-15 years) Information Leaflet and Assent – This is the digital version 3.0 July 2025 leaflet that can be used in Haemophilia centres for Northern Ireland.
UK Bleeding Disorder Young People (11-15 years) Information Leaflet and Consent Form for Those Able to Give Consent – This is the digital version 3.0 July 2025 leaflet which can be used in Haemophilia centres for Northern Ireland.
UK Bleeding Disorder Parent/Guardian Information Leaflet and Consent Form – This is the digital version 3.0 July 2025 leaflet that can be used in Haemophilia centres for Northern Ireland.
Patient Consent form – Haemophilia Centres staff should use the NHD website (https://nww.mdsas.nhs.uk/nhd) to access patient consent forms. This requires access to the secure NHS network and a valid user account.
Haemtrack
Haemophilia Centre Contact Information
A comprehensive list of the UK & Northern Ireland Haemophilia Centres details all the contact information patients may need
Alphabetical list of Haemophilia Centre contacts
Haemophilia Centre contacts sorted by area
We have compiled a list of websites aimed at the patient, carer & family with information on bleeding disorders.
These can be found on our Links page
If there is any information that has been left out of this section that will be of great use, please contact us and we will do all we can to help.
Access to National Haemophilia Database health records application form
An application form which allows patients to request their Health Records from the National Haemophilia Database. Included in this document are all the necessary details of how to do this. If you are a patient representative please download the form applicable to you.
vCJD and Plasma Products
Please review the below documents from the Department of Health regarding vCJD.
Download the Patients letter 
Information for people who have an increased risk of CJD
Who has an increased risk of CJD?
Data Set information
This dataset is consulted on with key stake holders for direct patient care, planning, commissioning, and research purposes through the Data Management Working Party
This includes lists of additional data points collected if an adverse event, such as a new factor VIII inhibitor, is reported to the database.
This list bears no relationship to data collected in previous years and should not be taken as a guide to the information collected in the past. Data collected in the earlier years of the database was very limited but has widened gradually with the passage of time.