Why Not Take Advantage of the Opportunity?

ČSH

Several months ago we drew attention to the possibility of setting up an account on the Czech National Hemophilia Programme registry. Although its advantages are obvious, so far only a very small number of clients have taken advantage of it. Why? Perhaps they are not properly informed, perhaps they were put off by the collapse of the similar IZIP system, or perhaps they are simply too comfortable. Yet it really only takes a few minutes of their time and the benefit is significant.

Let us reiterate what the system means. Every member of the Czech Hemophilia Society, as well as non-members, can register. All you need to do is ask your treatment center to grant you access to the system. For the center, it is a matter of a few minutes - just fill in the necessary details and it is done. The Czech National Hemophilia Programme registry also brings many advantages for the centers themselves. All contact with clients takes place online via the internet. The center thus always has an immediate overview of consumed concentrates and can calculate when which ones will be needed. Paperwork is eliminated, as the client keeps the product consumption record themselves.

In addition, they have access to the necessary data anytime and anywhere, which is often difficult to prove to a foreign healthcare facility in case of emergency. Whether domestic or foreign. Right now, when many people travel abroad, is the perfect time to set up an account. In case of injury or other urgent need, they can easily prove what is necessary. And in the age of smartphones, accessibility is even easier.

The Czech Hemophilia Society has made considerable efforts over previous years to promote the system. It is a disappointment for the CSH Board that such a highly practical and useful system has not been widely adopted. It is truly a shame, because in developed countries abroad, something similar has been functioning for years.

We definitely recommend that everyone explore the options and judge for themselves what advantages and possibilities the registry with their own unique access provides. After all, only the relevant hemophilia center and the person concerned can access the data. Whether it is a hemophilia patient or anyone with von Willebrand disease.

No description can replace personal experience. You can easily gain it by looking at the demonstration programme of the registry at https://trials.cba.muni.cz/trialdb2/interface_forms/login_cnhp.asp with access provided by:

Once you request the creation of your own account and take the necessary steps in cooperation with your center, you will of course receive your own unique login credentials.

A detailed user manual is also available, which we publish on our website among other useful links in the Documents section, or you can open it directly at this link.