In Finland several organizations gather data and registries for administrative and statistical purposes. The Personal Data Act (523/1999) provides that research should be conducted without individual level data whenever possible. However, registry data include mainly confidential information. In order to obtain register data for research purposes, an authorization from the register controller is needed. The consent of the research subject is also required if register data will be linked with data or samples collected directly from the subject. Permission to access data in confidential social and health care registers and records for research purposes has to be applied from those institutes holding the data requisite to the study.
The permission fees for access the registry data vary depending on the Authority in question. The permission fee of data controlled by Ministry of Social Affairs and Health is 230€ and the data controlled by National Institute of Health and Welfare, 300€.
- Finnish Information Centre for Registry Research RETKI
- National Institute for Health and Welfare THL
- Ministry of Social Affairs and Health