Register data

Most of the phenotype data in FinnGen comes from the national health registers covering the entire lifespan of the study subjects. This covers data from more than 10 registers, including information on hospital and outpatient care and registers for specific diseases.

Like the other Nordic countries, Finland has kept comprehensive health registers for decades, and this allows capturing the usage of health care services for all residents over their entire lifetime. This register data can be applied for research purposes based on the Act on Secondary Use of Health and Social Data.

Finnish national registries have complete population-wide coverage: all citizens are included in these registries. All Finns have a unique personal ID number, which allows combining individual-level data from various data sources reliably and enables longitudinal data collection. 

National registries contain core clinical information, such as ICD-10 codes, drug prescription data and causes of death. The national registries most commonly used for health research include the Care Register for Health Care (Finnish Institute for Health and Welfare), the Drug Reimbursement Register (Social Insurance Institution), the Social Benefits Register (Social Insurance Institution), and the Cause of Death Register (Statistics Finland). Findata is the Finnish data permit authority for the social and health care sector.

Infographic titled “Finnish Health Registers Data Timeline” showing nationwide register data in Finland from 1953 to ~2020. Horizontal bars mark when key registers began and how long they have run, including cancer, population, hospital, mortality, infectious disease, screening, and prescription data. Newer additions include primary care, vaccination, and KANTA patient data (from 2014). Colors indicate data types (e.g., diagnoses, drugs, demographics, lab data).

Register data in FinnGen

Register data in FinnGen include hospital, special outpatient and primary care registers, the Cancer Register, drug purchase and reimbursement registers, the Population Register and Statistics Finland. These registers capture health care data nationwide across the life course of individuals. One of the strengths is that the data is in structured format utilising, for example, ICD and ATC codes. 

The study applies for permissions to utilise the register data for research purposes from the following national registers:

  • Statistics Finland
  • Finnish Cancer Registry and Mass Screening Registry
  • Register of Primary Health Care Visits (Avohilmo)
  • Care Register for Health Care
  • Kela
  • Digital and Population Data Services Agency
  • Finnish Register of Visual Impairment
  • Care Register for Social Welfare
  • Finnish Registry for Kidney Diseases
  • Finnish National Infectious Diseases Register
  • Medical Birth Register
  • Finnish National Vaccination Register
  • Register of Congenital Malformations

More details about the health registers linked to FinnGen study subjects:

DataNumber of study subjectsNumber of entries in the registerRegisterRegister start year or time period available
Drug purchases518 323156 139 052Social Insurance Institution of Finland (KELA: Medicinal products database)1995
Birthplace and emigration status518 720518 720​Population Register (DVV)​1964
Number of offspring 518 720518 720​Population Register (DVV)​1964
Primary care specialist outpatient visits (ICD-codes)510 38252 165 293Care Register for Health Care (Hilmo)1998
Occupation510 9267 610 130Statistics Finland 1970
In patient visits (ICD-codes)493 4038 931 622Care Register for Health Care (Hilmo)1969
Primary health care visits (ICD-codes)490 31532 341 483​Primary Health Care outpatient visits (Avohilmo)​2011
Primary health care visit by nurse (ICPC2)487 81644 270 310​Primary Health Care outpatient visits (Avohilmo)​2011
Primary care specialist outpatient operations (Nomesco)485 27117 485 251Care Register for Health Care (Hilmo)NA
Laboratory values483 078257 511 812 (rows); 1519 OMOP Concept IDsSocial Insurance Institution of Finland (KELA: KANTA services)NA
Vaccination data472 0904 743 299​Finnish National Vaccination Register 2011
Educational level403 668
 		12 710 228Statistics Finland1970
In patient operations (Nomesco codes)405 0325 531 865Care Register for Health Care (Hilmo)1986
Drug reimbursements316 729953 364 Social Insurance Institution of Finland (KELA: reimbursements for medicine expenses)1964
Kidney disease data2,800 (2,778 incidents & treatment history, 2,728 cases)34 363​Finnish Registry for Kidney Diseases​1964
Cervical cancer screenings263 1781 115 090The Mass Screening Registry (cervical cancer screening)1991
Data related to births228 479 mothers; 96 299 children 520 007 mothers; 96 299 children​Medical Birth Register 1987
Breast cancer screenings184 0891 171 771The Mass Screening Registry (breast cancer screening)1992
Cancer diagnosis (ICD-O-3)139 281180 633Finnish Cancer Registry and Mass Screening Registry1953
Infections disease data81 24182 153​Finnish National Infectious Disease Register 1989
Causes of death (ICD-codes)85 931198 098Statistics Finland 1969
Congenital malformation data11 404 mothers, 2870 children12 230 mothers, 6556 children  ​Register of Congenital Malformations1980
Covid-19 vaccinations10 27310 447​Finnish National Vaccination Register 2011
Visual impairment data41965006​Finnish Register of Visual Impairment 1983