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

Patient Information Leaflets

These important leaflets answer many of the questions patients and their relatives may have about the National Haemophilia Database and the Haemtrack home-treatment recording system. Click on the links below to download the leaflets.

‘‘The NHD patient information leaflet is undergoing review”.

‘Haemtrack Information Leaflet’ download this in Acrobat format

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 download this in Acrobat format
Information for people who have an increased risk of CJD download this in Acrobat format
Who has an increased risk of CJD?download this in Acrobat format

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.

Download the Data Set here download this in Acrobat format