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List of all projects Innovations and analyses of the registry on patients with haemophilia and other coagulation disorders

Coordinator Coordinator: Ovesná Petra

Duration Duration: 2015–2015

Collecting data on patients with congenital coagulation disorders, analysis of these data, presentation and publication of results, developing a tool for pharmacokinetic testing of patients as part of the CNHP registry.

The project was focused on the operation and innovations of the CNHP registry, which collects data on patients with rare hereditary coagulation disorders (haemophilia, von Willebrand’s disease and disorders of other coagulation factors), and on the analysis of collected data.

Data on patients were collected using the CNHP registry, which has been running since 2010, and the structure of which was further extended and modified as part of this project. Advanced analyses and presentations of collected data were carried out; these served as a feedback for physicians and showed, among others:

  • how effective and how expensive is treatment of patients with haemophilia and other coagulation disorders in the Czech Republic,
  • how is treatment in the Czech Republic different from treatments in other European countries,
  • the patients’ level of satisfaction with their treatment,
  • which changes in therapeutic approach might be introduced in order to make the provided care more personalised.

The achieved results were presented at national conferences and international meetings. Data in the registry also serve as important inputs and outputs for benchmarking of healthcare facilities in areas addressed by the registry.

Furthermore, the project was focused on the collection of pharmacokinetics data. A form called “Pharmacokinetics” was implemented into the structure of the pre-existing registry.

  • Funding: The project was supported by the Ministry of Health of the Czech Republic within the programme “National Health Programme – Health Support Projects”. The project is registered with the identifier 6/15/NAP.
  • Brief overview of results: you can find more detailed information – in Czech language only – on the website of the CNHP project
CNHP: a prospective study which monitors inherited haemorrhagic disorders: haemophilia, von Willebrand's disease and other haemorrhagic disorders