List of all projects HemIS - Hemophilia: Information System
Coordinator: Brabec Petr
Duration: 2003–2011
Contracting authority: Czech Society of Haematology
Clinical registry for the continuous and predictive assessment of treatment in haemophilia.
Clinical registry for the continuous and predictive assessment of treatment in haemophilia. The primary objective of the project HemIS is to create a clinically meaningful platform for storing data concerning haemophiliac patients. It enables the monitoring of general records on therapy, therapeutic processes and assessment of therapeutic responses. The main area of interest is the monitoring of patients with the FVIII/IX inhibitor, with the focus on typology of bleeding episodes in connection to therapy, assessment of the therapy effectiveness and the monitoring of inhibitor's dynamics (long-term trends and short-term fluctuations) in relation to the type and strength of bleeding and the applied therapy. Secondary objectives of the HemIS project are focused on the monitoring of parameters ("safety monitoring"), i.e. long-term monitoring of bleeding episodes, patients compliance, affectation of articulation or other organs. It also involves support for the parametric collection of data for an extended assessment or for the management of several independent specialized studies or research topics.
Data collection for the HemIS registry was terminated in July 2011. Records on numbers and treatment of haemophilia patients are currently being entered into the CNHP registry.
- Expert guarantor: prof. MUDr. Miroslav Penka, CSc. (Czech Society of Haematology)
- Funding: Novo Nordisk Ltd.
- Partners: 16 haematology centres in the Czech Republic (you can find more detailed information on the website of the HemIS project)
- Number of records: 522 (as on 29 July 2010)
- Brief overview of results: you can find more detailed information on the website of the HemIS project
URL: http://www.hemis.cz/
