About InfCareHepatit
InfCareHepatitis is a quality register, decision support system and research database that includes patients with Hepatitis B and C living in Sweden.
The register was established in 2008 in cooperation between the Infectious Diseases departments at the Karolinska and Sahlgrenska University hospitals. In 2015 it became a national quality register for Hepatitis B and C.
All clinics that treat patients with Hepatitis B and C participate in the register and more than 90% of patients with Hepatitis C are included in InfCareHepatitis (validated against the Swedish medical products agency).
Variables collected includes age, sex at birth, country of birth, type of virus (that is Hepatitis B, C and D) including viral levels (HCV-RNA, HBV-DNA, HDV-RNA), mode of transmission, date of diagnosis, liver function tests and results of liver elastography or liver biopsy. In case of treatment type of medication and treatment results are also registered as well as liver related complications such as liver cirrhosis.
The data is validated regularly on both a regional and national level by specific tools included in the system. The quality of the register is evaluated annually by the Swedish association of local authorities and regions (SKR) who decide on national register certificate and financial support to the register.
Before registration each patient is informed about the register and has the right to decline participation. Participants also have the right to exit the register at any given time point. Participants can request an extract on their data from the register, free of charge, in accordance with the European General Data Protection Regulation (GDPR 2016/679) and the Swedish Data Protection Act (2018:218). For detailed information, please read the patient information.
National Quality Register
InfCareHepatitis functions as a National Quality Register. The aim of a quality register is to enable continuous evaluation and improvement of quality of care on a regional and a national level.
Decision support system
InfCareHepatitis contains a decision support system. Data on viral levels, ALT-levels and treatment are presented through a graphical system.
Research
The database may also be used for research purposes. Ethical permission from the Swedish Ethical Review Authority is needed before applying to the InfCareHepatitis steering committee for access to anonymized data for research. If you wish to make an application, please contact the register holder at magdalena.ydreborg@vgregion.se for more information.