Directory of registries

Terminated international project covering the Central European region and focusing on the collection and analysis of data on haemophiliac patients, including health care quality assessment.

start of the project: January 2007

end of the project: December 2013

The HemoRec registry was devoted to the collection and analysis of data on patients with haemophilia A and/or haemophilia B. The project had the following objectives:

  • as a methodological study, it demonstrated the potential for data assessment in certain areas, created a model of data during its very collection and served to assess the diagnostics and therapy of haemophilia A and/or haemophilia B in the Central Europe,
  • it standardised the process of assessment of quality and effectiveness of health care provided to patients with haemophilia A and haemophilia B,
  • it provided data potentially useful in science and research.

These objectives were achieved in the form of independent protocols. The primary objective of the HemoRec project was 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 was 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 was to provide tools for specialised medical subprojects. These objectives were targeted, for example, into the area of optimisation 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 also included 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
  • Brief overview of results: you can find more detailed information on the http://www.hemorec.com/download.html