Which data do we collect?
All medical data are separately stored from the registration data under a unique code number in our database. They are therefore not directly traceable to an individual.
Current overview of Hepatitis C data collection (in Dutch)
Demographic and geographic information: relevant demographic and geographic data such as date of birth, country of birth and nationality.
History: information about relevant (liver) disorders in the past, including hepatitis A or B infection, liver diseases, liver cancer, hemophilia and cardiovascular diseases.
Substance use: the use of substances that may influence the outcome of treatment or liver disease, such as smoking, alcohol and drug use.
Hepatitis C: relevant data about the infection with hepatitis C, such as start and stop date, symptoms, route of transmission, hepatitis C medication, dosage, start and stop date of the medication and the result of the treatment.
Hepatitis B and D: relevant information about a co-infection with hepatitis B and D, such as start and stop date, symptoms, transmission route, hepatitis B medication and start and stop date of the medication.
Visits and measurements: all visits to a healthcare provider related to hepatitis C treatment, including data on height, weight and BMI.
Liver disorders: the presence of conditions that are (possibly) related to hepatitis C infection, such as liver cirrhosis, liver cancer (hepatocellular carcinoma) and liver transplantation.
Certain types of medicines that are not part of hepatitis C treatment, but were prescribed during treatment and may have an influence on the treatment.
Laboratory test results
- Hepatitis C diagnosis: the presence of hepatitis C virus particles (viral load) and antibodies against the hepatitis C virus.
- HIV diagnostics: to rule out the presence of the HIV virus.
- Virology and serology: the presence of other hepatitis viruses, antigens (proteins of micro-organisms) and antibodies.
- Hematology: research into the function of blood and blood-forming tissues.
- Clinical chemistry: research into the presence of various substances such as proteins and hormones.
- Resistance to antiviral therapy: genetic code of pieces of the hepatitis C virus to investigate possible resistance to hepatitis C medication.
Liver diagnostics
- Fibroscan, elastogram: examination date and results of a fibroscan and elastogram.
- Liver biopsy: collection date and results of a liver biopsy.
- Liver radiology: examination date and results of, for example, an ultrasound, CT or MRI scan of the liver.