Research and projectsGrant projects

Grant projects Ensuring interoperability between the Czech registry of haemophilia patients and the international database WAPPS-Hemo in the area of pharmacokinetics

Coordinator Coordinator: Ovesná Petra

Duration Duration: 2016–2016

Adequate amount of data on “similar” patients (in terms of age, weight, treatment type and factor degradation rate) is needed in order to obtain high-quality pharmacokinetic outcomes. Due to the prevalence of haemophilia, this was hard to achieve in the Czech Republic only; data centralisation was therefore in the interest of both physicians and patients.

One option to solve this issue was to transfer data on Czech haemophilia patients to WAPPS-Hemo, an international pharmacokinetic database of clotting factors, which is administered by the McMaster University in Canada. Estimates of pharmacokinetic parameters in this database are based on the principle of population-based models: less samples are required to be taken from an individual in order to determine his/her pharmacokinetic curve, and yet the estimate is sufficiently reliable and exact.

Since 2010, Data on Czech haemophilia patients have been collected and recorded into the nationwide registry on persons with blood clotting disorders – the Czech National Haemophilia Programme (CNHP). In order to avoid the registration into a new system and duplicate recording of similar data into another database, the physicians have preferred an automated transfer of selected records from the CNHP registry to the WAPPS-Hemo database; this would be done, of course, only with the respective physician’s and patient’s consent. This transfer, however, required not only modifications in the current data structure of the CNHP registry, but also the development of an application interface and a data interface for the data transfer itself; at the same time, this transfer had to comply with the requirements on maintaining the anonymity of records and information security management.

Outputs of this project involve a uniform format of pharmacokinetic profile for the physician/patient and a backward transfer of results to the CNHP registry, where they are saved and ready for export and statistical analyses. The main benefit consists in the individualisation of patients’ treatment – based on the obtained pharmacokinetic examination and on individual needs of any given patient.

This extension of the CNHP registry is a long-term activity. The achieved results are sustainable, and the collection of data is continuous, reaching far beyond the horizon of this project.

  • Funding: The project has been 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 57/16/RPZP.
CNHP: a prospective study which monitors inherited haemorrhagic disorders: haemophilia, von Willebrand's disease and other haemorrhagic disorders