List of all projects HemoRec - System for collection of data on haemophiliac patients
Coordinator: Brabec Petr
Start projektu: 2005
Contracting authority: Czech Ministry of Health
focused on the collection and analysis of data on haemophiliac patients, including the health care quality assessment.
The HemoRec registry is devoted to collection and analysis of data about patients with haemophilia A and/or haemophilia B. The project has the following objectives:
- as a methodological study, it shows the potential for data assessment in certain areas, creates a model of data during its very collection and serves to assess the diagnostics and therapy of haemophilia A and/or haemophilia B in the Central Europe,
- it standardizes the process of assessment of quality and effectiveness of health care provided to patients with haemophilia A and haemophilia B,
- it provides data potentially useful in science and research.
These objectives are achieved in the form of independent protocols. The use of software tools is unlimited both in time and scope. The primary objective of the HemoRec project is to create a meaningful platform for keeping data on haemophiliac patients, which would enable the monitoring of general records on therapy, therapeutic processes and assessment of therapeutic response. The main area of interest is the monitoring of patients with the FVIII/IX inhibitor with a specific focus on typology of bleeding episodes in connection to therapy, the assessment of therapy effectiveness and the monitoring of inhibitor's dynamics in relation to the type and strength (difficulty) of bleeding and the applied therapy.
The secondary objective of the HemoRec project is to provide tools for specialized medical subprojects. These objectives are targeted, for example, into the area of optimization and timing of infusions and their effect on the therapy effectiveness, monitoring the influence of different doses of medical products on the therapy, monitoring the effectiveness and results of a patient's rehabilitation, verifying the effectiveness of a prophylaxis on a decrease (or even prevention) in bleeding episodes and possibly other factors, too. The project includes also the collection of parametric datasets for an extended verification of cases or for independent, narrowly specialised studies and research projects.
- Funding: Novo Nordisk Ltd.
- Partners: haematology centres in the Czech Republic, Slovakia, Hungary, Poland and Slovenia
- Number of records: 2919 (as on 8 March 2012)
URL: 
