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 | 519 000 | 132 618 000 | Social Insurance Institution of Finland (KELA: Medicinal products database) | 1995 |
| Birthplace and emigration status | 519 000 | 519 000 | Population Register (DVV) | 1964 |
| Number of offspring | 519 000 | 519 000 | Population Register (DVV) | 1964 |
| Primary care specialist outpatient visits (ICD-codes) | 509 000 | 40 419 000 | Care Register for Health Care (Hilmo) | 1998 |
| Occupation | 507 000 | 6 987 000 | Statistics Finland | 1970 |
| In patient visits (ICD-codes) | 490 000 | 7 980 000 | Care Register for Health Care (Hilmo) | 1969 |
| Primary health care visits (ICD-codes) | 489 000 | 18 194 000 | Primary Health Care outpatient visits (Avohilmo) | 2011 |
| Primary health care visit by nurse (ICPC2) | 485 000 | 32 285 000 | Primary Health Care outpatient visits (Avohilmo) | 2011 |
| Primary care specialist outpatient operations (Nomesco) | 478 000 | 15 161 000 | Care Register for Health Care (Hilmo) | NA |
| Vaccination data | 471 000 | 3 687 000 | Finnish National Vaccination Register | 2011 |
| Educational level | 401 000
| 11 621 000 | Statistics Finland | 1970 |
| In patient operations (Nomesco codes) | 394 000 | 4 984 000 | Care Register for Health Care (Hilmo) | 1986 |
| Drug reimbursements | 303 000 | 862 000 | Social Insurance Institution of Finland (KELA: reimbursements for medicine expenses) | 1964 |
| Kidney disease data | 2800 (2778 incidence &treatment history, 2728 prevalence) | 2778 incidence, 24875 prevalence, 9525 treatment history | Finnish Registry for Kidney Diseases | 1964 |
| Cervical cancer screenings | 257 000 | 1 058 000 | The Mass Screening Registry (cervical cancer screening) | 1991 |
| Data related to births | 225 000 mothers, 96 000 children | 510 000 mothers, 96 000 children | Medical Birth Register | 1987 |
| Breast cancer screenings | 178 000 | 1 122 000 | The Mass Screening Registry (breast cancer screening) | 1992 |
| Cancer diagnosis (ICD-O-3) | 121 000 | 152 000 | Finnish Cancer Registry and Mass Screening Registry | 1953 |
| Infections disease data | 81 000 | 82 000 | Finnish National Infectious Disease Register | 1989 |
| Causes of death (ICD-codes) | 63 000 | 145 000 | Statistics Finland | 1969 |
| Congenital malformation data | 10 000 mothers, 2500 children | 13 000 mothers, 6 000 children | Register of Congenital Malformations | 1980 |
| Covid-19 vaccinations | 10 000 | 10 000 | Finnish National Vaccination Register | 2011 |
| Visual impairment data | 3 500 | 4 200 | Finnish Register of Visual Impairment | 1983 |