Table 3.
Government agencies involved in the management of registry-based data
| Country | Name | Name in local language | Area of responsibility |
|---|---|---|---|
| Denmark | Statens Serum Institute, http://www.ssi.dk/English/HealthdataandICT.aspx | Statens Serum Institut | Runs the National Health Surveillance – which supervises many key national health registries |
| Statistics Denmark, http://www.dst.dk/en.aspx | Danmarks Statistik | Runs several nationwide registries, such as most demographic databases | |
| The National Quality Improvement Programme, http://www.rkkp.dk/ | Regionernes Kliniske Kvalitetsudviklings-Program (RKKP) | Responsible for all clinical quality registries in Denmark | |
| Finland | National Institute for Health and Welfare, http://www.thl.fi | Terveyden ja Hyvinvoinnin Laitos (THL) Institutet för Hälsa och Välfärd | Social welfare and health care registries and statistics, eg, Medical Birth Registry, Registry of Child Welfare, Care Registry for Health Care, and statistics on morbidity, disability, primary health care services, etc |
| Statistics Finland, http://www.stat.fi | Tilastokeskus (Finnish)Statistikcentralen (Swedish) | Combines collected data with its own expertise to produce statistics and information services Statistics on population structure, births and deaths, causes of death, families, education, employment, occupational accidents, etc | |
| The Social Insurance Institution of Finland, http://www.kela.fi | Kansaneläkelaitos (Kela) Folkpensionsanstalten (Fpa) | Statistics on the rates and incidence of benefits, and their distribution by region and population group. Statistics on occupational health care, prescription medicines and medical expenses, benefits for the families and unemployed, etc | |
| Population Register Center, http://www.vrk.fi | Väestörekisterikeskus (VRK) Befolkningsregistercentralen | Maintains and develops the Population Information System, a national registry that contains basic information about Finnish citizens and foreign citizens residing permanently in Finland. Personal data recorded in the system includes name, personal identity code, address, citizenship, native language, family relations, occupation, membership in a religious community, and dates of birth and death | |
| Iceland | Directorate of Health in Iceland, http://www.landlaeknir.is/ | Embætti Landlæknis | Maintains and is responsible for several national health registries, such as Causes of Death Registry, Medicines Registry, and Patient Registry. Responsible for the Cancer Registry |
| Statistics Iceland, http://www.statice.is | Hagstofan | Maintains and is responsible for the Population Registry and other national population statistics | |
| Icelandic Cancer Registry, http://www.krabbameinsskra.is/ | Krabbameinsfélagið | Maintains and runs the Cancer Registry | |
| Norway* | Norwegian Institute of Public Health, http://www.fhi.no | Folkehelseinstituttet | Ten out of 17 national health registries: Cause of death, Medical Birth, Cardiovascular, Prescription, and Abortion Registry in addition to five registries related to infectious diseases control, immunization, and use of antibiotics |
| Norwegian Directorate of Health, https://helsedirektoratet.no | Helsedirektoratet | Patient registry, information system for the nursing and care sector, and ePrescription | |
| The National Archives, http://www.arkivverket.no/arkivverket/Arkivverket/Riksarkivet | Riksarkivene | Health archive registry | |
| South-Eastern Norway Regional Health Authority, http://www.kreftregisteret.no/ and http://www.oslo-universitetssykehus.no/omoss_/avdelinger_/nyfodtscreening | Helse Sør-Øst | Cancer registry of Norway, Newborn screening programme | |
| Statistics Norway, http://ssb.no/ | Statistisk Sentralbyrå | Registries and databases concerning population, employment, benefits, income, and education | |
| Regional Health Authorities, http://www.kvalitetsregistre.no | Regionale Helseforetak | National quality registries | |
| Sweden | National Board of Health and Welfare, http://www.socialstyrelsen.se | Socialstyrelsen | Health care registries |
| Statistics Sweden, http://www.scb.se | Statistiska Centralbyrån (SCB) | Registries concerning follow-up times (birth, migration, and date of death), relationships between individuals, education, etc. Also responsible for most selection of controls (reference individuals) |
Note:
*
Use of several of the registries and databases, or specific variables, such as diagnoses, requires approval from the Ministry of Labor and Social Affairs (NAV), National Tax Administration, or Ministry of Education and Research.