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
Patient Information Leaflets
On September 2020, 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, 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 a number of reasons:
- If any patients 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 a NHS Digital requirement that we have this support when applying for mortality data.
- With the global Covid-19 pandemic consultations are being conducted virtually, and where appropriate, patients receive product at home to enable them to self-medicate. This has reduced the amount of opportunities for consent to take place.
However, as this support removed the requirement to seek a patient’s consent, the new patient information that has been drafted provides detail on the persons data rights, and presents them with the clear opportunity to opt out of their data being used for research. This would usually take place at the Haemophilia Centre during consultation, but if the person wants to think about it, or change their mind, they can contact us direct and we will process their rights to opt out. For further information on Section 251, please follow the HRA link here: https://s3.eu-west-2.amazonaws.com/www.hra.nhs.uk/media/documents/cag-frequently-asked-questions-1.pdf
This change means that the requirements for consenting patients for each national region is now different. The consent process will continue in both Scotland and Northern Ireland until further notice. 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. To ensure there is no confusion we have added the relevant patient information by each region.
England and Wales
Broadcast – this is a ‘one pager’ to meet NHS digital, HRA (CAG) requirements and patient representative requirements. It highlights approval of section 251 support, the exchange of identifiers for mortality purposes and patients’ rights to opt out for research purposes. It also includes the National Data Opt-Out Service. The purpose of this is to make this available in laminated A3 format in centres, but can also be used patient representative organisations websites. NHD One Page Broadcast v5.0 England and Wales.pdf
NHD Information Leaflet (your questions answered) – This is a redrafted version of the leaflet that can be printed and folded and which can be used in Haemophilia centres. NHD Information Leaflet 2021 v5.0 England and Wales.pdf
Data Opt-out Form – For England and Wales, with approval of section 251 support, we have moved away from the consent model for research purposes. 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 our form will be made available to all Haemophilia centres. Patients will also be able to contact the NHD direct. NHD Patient Research Opt-Out Form v.3.0 England and Wales.pdf
The Scottish Public Benefit and Privacy Panel for Health and Social Care (PBPP) gave approval in September 2021 for Haemophilia Centres in Scotland to share data with the NHD to enable it to collect, store and process confidential data for research and non-research purposes, without written consent from the individuals concerned. This agreement from PBPP recognises the practical difficulties in obtaining written informed consent, for example, from people lost to follow up or deceased.
NHD Information Leaflet (your questions answered) – This is a redrafted version of the leaflet that is being used in Scotland that can be printed and folded and which can be used in Haemophilia centres. Scotland Patient Information Leaflet 2021 v3.0.pdf
Data Opt-out Form – For Scotland, with approval of the Scottish Public Benefit and Privacy Panel for Health and Social Care support, we have moved away from the consent model for research purposes. 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. NHD Patient Research Opt-Out form v3.0 Scotland.pdf
NHD Information Leaflet (your questions answered) – This is a redrafted version of the leaflet for Northern Ireland that can be printed and folded and which can be used in Haemophilia centres. NI Patient Information Leaflet 2021 v2.0.pdf
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.
Haemophilia Centre Contact Information
A comprehensive list of the UK & Northern Ireland Haemophilia Centres details all the contact information patients may need
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 lists the information the Department of Health requires the National Haemophilia Database to collect in 2018.
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.