FinRegistry

FinRegistry uses nation-wide registry data to build machine learning models that will help to better understand and predict the onset of diseases in the Finnish population.

This fully registry-based project utilizes the unique registry system in Finland, which allows us to combine health data with a wide range of other information that may play a role in disease development, from nearly the whole Finnish population. 

Goals

The FinRegistry project aims to leverage nation-wide health and other supporting registry data to explore comprehensive risk trajectories of disease outcomes and use this information to develop statistical and machine learning models to predict disease occurrences from registry data.

This project will use the complex relationship between health outcomes, medications, socio-demographic information, and familial risk to provide new epidemiological and biological hypotheses that can then be directly followed up with more targeted studies.

Results of this study can support future research to develop personalized health care based on disease-specific prediction models.

Registries and data used

The research data includes information from the following registries:

• Finnish Institute for Health and Welfare (THL)
  • Care Register for Health care
  • Register of Primary Health Care visits
  • Cancer Register
  • Care Register for Social Welfare
  • Medical Birth Register
  • Register of Social Assistance
  • Finnish National Infectious Diseases Register
  • Finnish National Vaccination Register and monitoring of the vaccination programme
  • Register of Congenital malformations
• Digital and Population Data Services Agency (DVV)
  • Identification of research subjects, basic personal information, living history, marriage history, relatives
• Finnish Centre for Pensions
  • Earnings register
  • Pension register
• Statistics Finland (Tilastokeskus)
  • Cause of Death Register
  • Information on education, job occupation and socioeconomic status
• Social Insurance Institution of Finland (KELA)
  • Drug Reimbursement Register
  • Drug Purchase Register
  • Kanta Prescription Centre and Prescription Archive
  • Kanta laboratory values
• Finnish Intensive Care Consortium
  • Intensive care registry

Read more about the registers on finregistry.fi.

Partners

FinRegistry is a joint research project of the Finnish Institute for Health and Welfare (THL) and the Data Science Genetic Epidemiology research group at the Institute for Molecular Medicine Finland (FIMM), University of Helsinki.

Funding

This project is funded by a starting grant AI-Prevent (grant agreement No 945733) from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme.

Data protection

Data protection and data security are high priorities in this project, and personal data is processed under the data protection legislation.

• The data is pseudonymized, meaning that it does not include any direct identifiers, which would be enough on their own for the identification of an individual. Social security numbers are replaced by pseudo IDs (unique random ID), and names are removed from the data. Researchers do not identify individuals from personal data.
• The personal data is stored and processed only in a secure server, which is developed for sensitive data and is not connected to the internet. 
• The data is accessible only for approved researchers of this project.

For more information on how we protect your data, see our documentation:

• Privacy Notice (pdf, 206 KB)

Data protection officer

tietosuoja(at)thl.fi

Data protection legislation grants the study participant specific rights that the participant may exercise to ensure privacy as one of fundamental rights. Should you wish to exercise these rights, please contact kirjaamo(at)thl.fi

You have the right to make an appeal to the Office of the Data Protection Ombudsman, if you consider that prevailing data protection legislation has not been followed when your personal data have been used. 

Office of the Data Protection Ombudsman
Street address: Lintulahdenkuja 4, 00530 Helsinki
Mail address: PL 800, 00531 Helsinki
Telephone: +358 29 566 6700
E-mail: tietosuoja(at)om.fi

Contact

e-mail: [email protected]

Dr. Markus Perola
Research Professor and Principal Investigator
Finnish Institute for Health and Welfare (THL)
Population Health Unit
P. O. Box 30, FI-00271 Helsinki
tel. 029 524 8727