Access to national register data
Information from the Finnish national social welfare and health care registers (e.g. Care Register for Health Care HILMO, Cancer Register), Statistics Finland's registers (e.g. Causes of Death Register), Kela’s registers (e.g. Drug Purchase and Drug Reimbursement Registers) and patient registers can be utilized in biobank research. The register data can be used to obtain recorded information on the biobank donors' health e.g. follow-up data after they have donated the samples. Combining register data with biobank samples and data can provide important information on the incidence of diseases and the effectiveness of treatments.
However, THL Biobank is not authorized to approve access to the national register data, but the linkage of the register data to the biobank sample donors can be done by a separate permission and application process. Permission is required from all relevant register officials, in most cases the data permit is applied from the Social and Health Data Permit Authority, Findata.
Register-based disease-status data
In addition to the raw register data that can be applied from the different national registers, for THL population studies (National FINRISK Study, Health 2000/2011 Surveys and National FinHealth Study) there is pre-processed disease-status data combined from various registers available in THL. The clinical end-point definitions behind the disease-status data are based on the expert work done in THL and within the FinnGen project. The disease-status data currently available in THL is described in the ’Description of register-based disease-status data’ file. Using the disease-status data in biobank project also requires permission from Findata.
Read more about the clinical endpoints defined in the FinnGen project
Description of register-based disease-status data (xlsx 83 kb)
Application process for register linkage in biobank projects
The linkage to national register data is to be described in the biobank application and approved by THL Biobank.
In addition, the project-specific data permit for the linkage is to be applied from all relevant register officials, in most cases from Findata. To save time, the application processes to biobank and Findata can be parallel. In case any advice or assistance is required during the application process, please contact THL Biobank (admin.biobank @ thl.fi) or Findata (info @ findata.fi).
