Swedish national registry for bleeding disorders - first report

• Introduction : Hemophilia care in Sweden is centralized to 3 centers localized in Gothenburg, Malmö and Stockholm. All centers are certi-fied as European Hemophilia Comprehensive Care Centers (EHCCs). Recently a web- based Swedish national registry has been established with funding from Swedish authorities. Methods : One of the conclusions from the earlier reports from the Swedish agency for health technology assessment and assessment of social services (SBU) and the Dental and Pharmaceutical benefits agency (TLV) was that a national registry for hemophilia and other bleeding disorders was needed to be able to follow the long- term effects of the disease and treatment strategies. An application was submitted in 2012 to apply for funding from Swedenʹs municipali-ties and count councils (SKL). The registry was validated as an official national registry. A multi- professional steering committee is running the registry with representatives from all 3 hemophilia centers includ-ing physicians, nurses, physiotherapist and a patient representative. Support regarding legal aspects, IT- solutions, statistics and economy is provided by QRC Stockholm. Results : By now, 780 patients with bleeding disorders are included in the Swedish national Registry and data regarding bleedings, treat-ment with factor concentrate, inhibitor status, mutations, viral infections such as hepatitis C and HIV are collected. Patient reported outcome measurements (PROM)- such as pain and quality of life - HJHS and target joints are followed continuously. Discussion/Conclusion : The establishment of a Swedish National Registry enables us to perform national annual reports, have a close follow- up of our patients and perform clinical research. Currently are working on an on- line patient treatment application recording directly into the registry. Data from the registry will be an important tool for further evaluation of the treatment of hemophilia and how it affects the long- term consequences of the disease.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Hematologi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Hematology (hsv//eng)

Nyckelord

hemofili

registeruppföljning

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