Table S1.
Selected national registries in the Nordic countries
| National health registries | Establishment details: year and type of registry | Responsible organization | Information available from registry |
|---|---|---|---|
| Denmark | |||
| Danish National Patient Registry (DNPR)65 | 1977; outpatient visits at hospitals and emergency room visits have been included since 1995 | Statens Serum Institute (SSI) | All admissions to somatic hospitals. Variables include civil registration number, dates of admission and discharge, type of admission, diagnosis codes, procedures, and some types of treatment |
| The Registry of Medicinal Product Statistics | 1994, with complete data from 1995 | SSI | All prescribed drugs dispensed by pharmacies in Denmark. Data include civil registration number, product code (Nordic article number), encoding name, form, strength, and pack size, Anatomical Therapeutic Chemical Classification System (ATC) (http://www.whocc.no/atc_ddd_index/), defined daily dose (DDD), and dispensing date |
| The Danish Medical Birth Registry66 | 1973 | SSI | For all pregnancies ending in a live or stillbirth: civil registration numbers of the mother and the newborn. Data on the newborn: sex, date of birth multiplicity, birth weight, length, fetal presentation, gestational age, and Apgar score Maternal data: parity and smoking during pregnancy |
| The Danish Cancer Registry67,68 | 1943 | SSI | Civil registration number, diagnosis, date of diagnosis, topographical and morphological data, stage, and treatment given within the first 4 months of diagnosis |
| The Danish Registry of Causes of Death | 1970 | SSI | Data from the death certificates are completed for all Danish decedents, including civil registration number, causes of death coded as one underlying cause of death, and up to three additional immediate causes (ICD codes), other diseases, and autopsy findings |
| Danish Psychiatric Central Research Register69 | 1969/1995 | SSI | Civil registration number, admission and discharge dates, dates of outpatient visits, hospital code, mode of admission (voluntary or compulsory), and all diagnoses Outpatient and emergency room visits at psychiatric hospitals have been included since 1995 |
| Iceland | |||
| Cause of Death Registry | 1911/1971 (electronic since 2014) | Directorate of Health in Iceland | All deaths are reported by physicians through a death certificate containing cause(s) of death, date of death, age, sex, and residency of deceased; ICD-10 codes (http://www.who.int/classifications/icd/en/) have been included since 1996 |
| Icelandic Medical Birth Register | 1972/1981 (electronic since 2014) | Directorate of Health in Iceland | For all pregnancies resulting in stillbirth or live birth after gestational week 22: maternal demographic characteristics and health during pregnancy, complications during and after pregnancy/birth, medicine use in pregnancy, diagnoses, and malformations in child (based on ICD-10 codes and Nordic Medico-Statistical Committee [NOMESCO] Classification of Surgical Procedures) (http://www.nordclass.se/ncsp_e.htm). Information about the father’s occupation and cohabitation with mother, as well as the mother’s occupation |
| Icelandic Medicines Registry | 2003 | Directorate of Health in Iceland | Prescription drugs dispensed by pharmacies (including nursing homes/institutions but not hospitals). DDD, package size, ATC codes, Nordic package number, specialty of prescriber, age, sex, and residency of patient, and location of drug dispensing |
| Cancer Registry of Iceland | 1955 | Directorate of Health in Iceland, maintained by the Icelandic Cancer Society | Types and morphology of cancers in Iceland. Date of diagnosis (ICD-7, ICD-9, ICD-10, ICD-O3) (http://www.who.int/classifications/icd/en/); patient demographic characteristics; date of cancer-related deaths |
| Icelandic Patient Registry | 1999 | Directorate of Health in Iceland | Institution codes, dates of admission and discharge (inpatient only), ICD-10 diagnoses, and procedure codes. Type of admissions, patient demographic characteristics, etc |
| Finland | |||
| Causes of Death Registry | 1936 | Statistics Finland | The statistics on causes of death are compiled from data obtained from death certificates, which are supplemented with data from the population information system of the Population Registry Center The statistics contain data on deaths and mortality by cause of death, age, sex, marital status, and other demographic variables. The statistics also contain data on the circumstances of death, as well as on perinatal, neonatal, and infant mortality. The annual statistics are compiled by the statistical underlying cause of death. ICD-10 codes since 1996 |
| Medical Birth Registry | 1987 | National Institute for Health and Welfare (THL) | The registry includes data on live births and stillbirths of fetuses with a birth weight of at least 500 g or with a gestational age of at least 22 weeks, as well as data on the mothers Data sources are maternity hospitals, Population Information System of the Population Registry Center, and Causes of Death Registry Data about the mother, including demographic characteristics, previous pregnancies and deliveries, weight and height before pregnancy, smoking habits, check-ups, diseases, and hospital care during pregnancy and delivery (duration, method of delivery, pain relief, mother’s diagnoses, gestational age, length of stay in hospital) Data about the child, including date and time of birth, sex, weight and length at birth, head circumference, Apgar scores at 1 minute and 5 minutes, pH of umbilical blood, diagnoses, and care interventions by the age of 7 days; there are additional data on small preterm infants |
| Statistics on reimbursements for prescription medicines | 1995 | The Social Insurance Institution of Finland (Kela) | The statistics consist of reimbursement data on prescription medicines analyzed statistically according to the date of purchase. All permanent residents of Finland are covered under the Finnish National Health Insurance (NHI) system. All are eligible for reimbursement for the cost of reimbursable medicines prescribed by a doctor or dentist. Only outpatient medication costs are covered. Medication administered in public hospitals is not reimbursable Data content: prescription, purchase of medicine, medicine expenses and reimbursement for medicine expenses, and recipient of a reimbursement with respect to a purchase of medicine Classifications used: ATC classification of medicines, reimbursement category of medicines, diseases conferring an entitlement to a special rate of reimbursement or to medicines with limited reimbursability, physician specialization, general regional classifications, and general demographic classifications |
| Finnish Cancer Registry | 1953 | THL | All persons residing in Finland who have developed cancer are registered in the Cancer Registry, as well as the data of those people who form the target population for mass screenings The registry includes personal data (including demographic characteristics), cancer data (primary site of tumor, time of detection, stage, histologic type, primary treatment), and death certificate data of patients, as well as data on mass screenings for breast and cervical cancer (results of screening, results of further examinations, final diagnosis after further examinations) |
| Care Register for Health Care | 1994 (from 1969 to 1993 it was called the Hospital Discharge Registry and only included data on patients discharged from hospitals) | THL | The registry includes data on inpatient care in health centers, hospitals, and other institutions, day surgeries and specialized outpatient care, providers of those services, patients, admission and discharge, diagnoses, and treatments provided. Primary health care is not included here, but these data are kept in the Registry of Primary Health Care Visits Data on start of care (referring party, date of admission, etc), data on treatment (reason for seeking care, diagnoses, type of accident, procedures and interventions, decisions on long-term care, etc), data on discharge (date and further treatment), and some additional data on heart and psychiatric patients (complications and medication, etc) |
| Norway | |||
| Cause of Death Registry (DÅR) | 1925/1951 | Norwegian Institute of Public Health (NIPH) | All deaths are reported by doctors through a death certificate containing cause(s) of death, date of death, and location of death |
| Medical Birth Registry of Norway (MBRN) | 1967 | NIPH | For all pregnancies ending after gestational week 12: maternal health before and during pregnancy, complications during and after pregnancy/birth, medicine use in pregnancy, assisted conceptions, and diagnoses and malformations in child. Information about the father’s occupation and smoking habits, as well as the mother’s occupation and smoking and alcohol habits. Body mass index of mother |
| Norwegian Prescription Database (NorPD) | 2004 | NIPH | Prescription drugs dispensed by pharmacies (not hospitals/nursing homes/institutions). Reimbursement codes (ICD-10 codes), prescribed dose, DDD, package size, and ATC codes |
| Cancer Registry of Norway | 1952 | South-Eastern Norway Regional Health Authority (Helse Sør-Øst) | Types, stages, and morphology of cancers in Norway. Date of diagnosis (ICD-10). Date of cancer-related deaths |
| Norwegian Patient Registry (NPR) | 1997/2007 | Norwegian Directorate of Health | Norwegian specialist health care services (somatic and mental health care, in- and outpatients) with linkable data from 2008 onward. ICD-10 diagnoses and procedure codes. Type of admissions (elective/acute, outpatient/inpatient), etc |
| Sweden | |||
| Swedish Medical | 1973 | National Board of | The medical birth registry contains antenatal and perinatal data on >98% of all births in Sweden since |
| Birth Registry | Health and Welfare | 1973. Data collection starts at registration for antenatal care, which occurs by the 12th week of gestation in more than 90% of the pregnancies. Since 1982, data are collected prospectively on standardized forms starting at the first prenatal health visit, and variables include smoking | |
| Swedish Patient Registry70 | 1964 | National Board of Health and Welfare | Complete coverage since 1987. Variables on psychiatric disease were added in 1973. In 1997, data on “day surgery” were added, and in 2001 hospital-based outpatient care was added. Primary health care is not included. |
| Cause of Death Registry71,72 | 1952/1961 (complete since 1961) | National Board of Health and Welfare | Annual mortality reports have been published in Sweden throughout the 20th Century. The National Board of Health and Welfare receives death certificates on >99% of all deaths. Since 1997, the Cause of Death Registry is also matched with the Total Population Registry to ensure that all deaths are recorded. In some (0.5%) of the deaths, no underlying cause of death is reported to the Board; in such cases, the patient is assigned the ICD code R99.9 |
| Cancer Register73,74 | 1958 | National Board of Health and Welfare | The Cancer Registry started in 1958. Approximately 99% of all cancers are morphologically verified, and approximately 96% are reported to the Cancer Registry. More than 50,000 cancer cases are reported to the Cancer Registry each year. Physicians reporting to the Cancer Registry today report the ICD-10 code, the type and the location of the malignancy in plain text, as well as data on morphology according to the ICD for Oncology (3rd Edition, ICD-O-3)76 from the pathologist. The Cancer Registry then centrally supplements these data with the corresponding ICD-7 code |
| Prescribed Drug Register75 | 2005 | National Board of Health and Welfare | The Prescribed Drug Registry started in 2005 and contains data on expenditures of prescribed drugs. Over-the-counter drugs are not included |
Note: A civil registration number is the same as a personal identity number (PIN).
Abbreviations: DDD, defined daily dose; ICD, International Classification of Diseases.