Patient information sheet

A patient information sheet can be downloaded from here

General

If you are on home treatment, you will have agreed to keep and return accurate and timely home treatment records so that your haemophilia treatment can be assessed. This is required of all patients on home therapy.

Home treatment records are very useful for your haemophilia team because they help them to assess your treatment and bleeding pattern. This helps them to work out whether you are on the best treatment and, where necessary, to advise you how to improve your treatment. This is far better than relying on one’s memory of how many bleeds one has had and into which joints and when. This information will be reviewed by your haemophilia doctors and nurses in clinic and between clinic visits.

This information is now also required by Specialist Health Commissioners. They pay the bills and need to justify the considerable cost of treating haemophilia.

Instead of recording this information on paper and then bringing or sending it to your Haemophilia Centre, we would prefer you to complete your records electronically by way of the easy to use Haemtrack computer website or Haemtrack phone app. Every Haemophilia Centre in the UK can use the Haemtrack system.
This is a very easy to use system which helps you to report all your bleed and treatment information to your Centre as quickly as possible rather than months later which frequently happened with the paper system. Access to this information as quickly as possible enables your Centre to give you the best possible care. You can use this on your home computer or, preferably, on your smartphone (iPhone or Android phone).


• A secure treatment recording system connecting you to your Haemophilia Centre.
• It enables you to record all treatments as they occur.
• It allows your Centre to see your up to date treatment information to help improve your care.
• This treatment information will be stored securely in the National Haemophilia Database and your Haemophilia Centre’s computer system.

Yes. Haemtrack provides access to information that has never before been possible, allowing us to carry out new research into “real world” treatment practices. This information will be anonymously analysed to assess the range of treatment practice, since that differs from patient to patient and from centre to centre. We will also analyse the relationship between treatment practice and outcome, to find out how treatment pattern affects bleed-rate and joint disease. Haemtrack will also be a useful tool to monitor the introduction of new longer half-life concentrates and to compare them with currently used products once they are in general use.

Some of this research will be funded by and conducted in collaboration with industry. This research is “observational” in that it is a study of normal treatment and does not involve any change in treatment regimen or the use of any trial therapies. We do not conduct clinical trials and your choice of treatment and any potential participation in clinical trials remains entirely between you and your centre doctor.

Only anonymised data will be analysed. Third parties will not be provided with any personal information and will only be provided with anonymised reports.

The use and storage of personal information is regulated by the Data Protection Act (DPA 1998). According to the Act, you must be told about any of your personal data that is held on computer and why it is collected.

You have the right to ask for some or all of your information to be removed from the database by asking the database team or your centre (see below for contact details). You will have a copy of everything that Haemtrack holds in your own computer.

For further information on your rights under the Data Protection Act, how we use this data or the security features of the system, click on the following link: Data Protection Act 1998

For further information on the National Haemophilia Database click on the following link: UKHCDO.org