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.
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:
| Data | Number of study subjects | Number of entries in the register | Register | Register start year or time period available |
| Drug purchases | 518 410 | 146 021 802 | Social Insurance Institution of Finland (KELA: Medicinal products database) | 1995 |
| Birthplace and emigration status | 518 853 | 518 853 | Population Register (DVV) | 1964 |
| Number of offspring | 518 853 | 518 853 | Population Register (DVV) | 1964 |
| Primary care specialist outpatient visits (ICD-codes) | 509 573 | 47 261 297 | Care Register for Health Care (Hilmo) | 1998 |
| Occupation | 510 069 | 7 407 920 | Statistics Finland | 1970 |
| In patient visits (ICD-codes) | 491 348 | 8 531 700 | Care Register for Health Care (Hilmo) | 1969 |
| Primary health care visits (ICD-codes) | 489 895 | 22 957 358 | Primary Health Care outpatient visits (Avohilmo) | 2011 |
| Primary health care visit by nurse (ICPC2) | 487 046 | 38 099 477 | Primary Health Care outpatient visits (Avohilmo) | 2011 |
| Primary care specialist outpatient operations (Nomesco) | 481 737 | 16 509 445 | Care Register for Health Care (Hilmo) | NA |
| Vaccination data | 471 992 | 4 526 255 | Finnish National Vaccination Register | 2011 |
| Educational level | 403 031
| 7 407 920 | Statistics Finland | 1970 |
| In patient operations (Nomesco codes) | 400 375 | 5 318 381 | Care Register for Health Care (Hilmo) | 1986 |
| Drug reimbursements | 310 141 | 908 188 | Social Insurance Institution of Finland (KELA: reimbursements for medicine expenses) | 1964 |
| Kidney disease data | 2775 | 34363 | Finnish Registry for Kidney Diseases | 1964 |
| Cervical cancer screenings | 260 093 | 1 088 608 | The Mass Screening Registry (cervical cancer screening) | 1991 |
| Data related to births | 224 940 mothers; 96 469 children | 509 948 mothers; 96 469 children | Medical Birth Register | 1987 |
| Breast cancer screenings | 181 505 | 1 172 703 | The Mass Screening Registry (breast cancer screening) | 1992 |
| Cancer diagnosis (ICD-O-3) | 128 526 | 163 430 | Finnish Cancer Registry and Mass Screening Registry | 1953 |
| Infections disease data | 81 241 | 82 153 | Finnish National Infectious Disease Register | 1989 |
| Causes of death (ICD-codes) | 78 301 | 181 102 | Statistics Finland | 1969 |
| Congenital malformation data | 10 195 mothers, 2515 children | 12 861 mothers, 6119 children | Register of Congenital Malformations | 1980 |
| Covid-19 vaccinations | 10 273 | 10 447 | Finnish National Vaccination Register | 2011 |
| Visual impairment data | 3707 | 4454 | Finnish Register of Visual Impairment | 1983 |