Abstract

The objective of the HemoRec project is to establish a parametric base for the collection and analysis of data about the therapy of patients with haemophilia A and B; this will be then used for the evaluation of quality and effectiveness of care provided in the Central Europe region. On the basis of mutual agreement, five central-European countries will take part in the project (Czech Republic, Hungary, Poland, Slovak Republic, Slovenia), represented by prime haematological centres in these countries.

The HemoRec Register is focused on data collection and analysis from patients with haemophilia and it fulfills the following tasks:

1) As a methodological study it shows the potential of data evaluation in particular departments, and it creates a data model during regular data collection, serving the evaluation of diagnostics and therapy of haemophilia A and/or B in Central Europe;
2) It standartise the procedures of the evaluation of quality and effectiveness of health care provided to patients with haemophilia A and B;
3) It yields scientifically utilizable data.

These tasks are secured in the form of independent protocols; the utilizability of software tools is unlimited as regards time and extent.

The primary goal of the HemoRec project is to establish a platform for clinically meaningful record keeping about patients with haemophilia, which will enable the monitoring of general records about the therapy, the monitoring therapeutic procedures and the appraisal of therapeutic responses. The main sphere of interest is the monitoring of patients with inhibitor to FVIII/IX, with focus on the types of bleeding episodes in connection with the therapy, the assessment of therapeutic effectiveness and the monitoring of inhibitor dynamics (long-term trends and short-tem fluctuations) in relation to the type and difficulty of bleeding and the therapy applied.