Inventory of Administrative and Clinical Datasets with Possible Applications to Multiple Sclerosis Research
Appendix-e4. Preparation of dataset inventory
Table of Contents
Acknowledgements & Disclaimer 16
Findings 17
Table 1. Comparison of administrative datasets worldwide 17
Table 2. List of data sources with countries of origin, comorbidities evaluated and first author of publication. 23
Administrative Data Sources 30
North America 30
Canada 30
National Databases 30
Discharge Abstract Database (DAD) 30
The Hospital Morbidity Database (HMDB) 31
National Ambulatory Care Reporting System (NACRS) 32
Provincial Databases 33
Alberta 33
Alberta Health Care Insurance Plan (AHCIP) Registry 33
Inpatient Discharge Abstract Dataset (DAD) 34
Ambulatory Care Classification System Dataset 34
Practitioner Payments Dataset 35
Population Registry 35
Pharmacy Data- Alberta Blue Cross 35
Multiple Sclerosis Clinic Database, University of Calgary 36
British Columbia (BC) 36
Population Data BC 36
Medical Services Plan (MSP) Payment Information Dataset 37
Pharmacare 38
PharmaNet 38
https://www.popdata.bc.ca/data/external/PharmaNet?nopaging=1 39
Discharge Abstract Database (DAD) 39
Mental Health 39
BC Cancer Agency 40
Demographics Dataset: Consolidation File 40
British Columbia Multiple Sclerosis Database (BCMS) 40
Manitoba 41
Population Health Research Data Repository 41
Hospital Discharge Abstracts Data (DAD): 42
Medical Services Data (Physicians Claims) 42
Drug Program Information Network Data 43
Mental Health Management Information System (MHMIS) 43
Urgent Care 44
Emergency Care Database 44
Multiple Sclerosis Clinic Database and Registry, Health Sciences Centre, Winnipeg 45
Nova Scotia 45
Research Data Repository 45
Physician Billings Database 46
Hospital Discharge Abstract Database 46
Mental Health Outpatient Information System (MHOIS) 46
PharmaCare Prescriptions 47
Insured Patient Registry (MASTER) 47
Dalhousie MS Research Unit (DMSRU) Database 48
Newfoundland & Labrador 48
Newfoundland & Labrador Centre for Health Information 48
Clinical Database Management System (CDMS) (CIHI Discharge Abstract Database) 49
MCP Fee-for-Service Physician Claims Database 49
Newfoundland & Labrador Prescription Drug Program Dataset 49
Newfoundland & Labrador Chronic Disease Surveillance System 50
Cancer and Chronic Disease Research Database 50
Ontario 51
The Institute for Clinical Evaluative Sciences (ICES) 51
Ontario Health Insurance Plan (OHIP) Database 52
Discharge Abstracts Database (DAD) and Same Day Surgery Database (SDS) 52
Ontario Drug Benefits Claims 52
National Ambulatory Care Reporting System 53
Ontario Mental Health Reporting System 53
Cardiac Care Network 54
CT/MRI Abstraction Data 54
Ontario Cancer Registry 54
Ontario Diabetes Database 55
Quebec 55
EPSEBE (Environnement pour la Promotion de la Santé et du Bien-être) 55
Re´gie d’Assurance Maladie du Québec (RAMQ) (Physician Billing Database) 56
Fichier d'admissibilité au régime général d'assurance médicaments (Prescription Drug Insurance) 57
Maintenance et Exploitation des Donne´es Pour l’Etude de la Clientèle Hospitalière (Hospital Discharge Database) 57
Saskatchewan 58
Saskatchewan’s Health Services Databases 58
Prescription Drug Data 58
Hospital Services Data 59
Medical Services Data 59
Cancer Registry 60
United States 61
Medicare/Medicaid 61
Medicare 61
Medicaid 62
Chronic Condition Data Warehouse (CCW) 64
Master Beneficiary Summary File 65
Institutional and Non-institutional fee-for-service files 65
Inpatient (IP) Base Claim Files 65
Outpatient (OP) Base Claim Files 65
Part D Prescription Drug Event data 65
Medicaid Analytical Extracts (MAX) Inpatient Files 65
Medicaid Analytical Extracts (MAX) Drug Files 65
Medicaid Analytical Extracts (MAX) Personal Summary Files 65
Medicare-Medicaid Linked Enrollee Analytic Data Source 65
SEER-Medicare Linked Data 65
Veterans Administration Databases (VHA) 66
VHA Corporate Data Warehouse (CDW) 67
Inpatient 68
Outpatient 68
Mental Health Assessment 68
Patient (demographics) 68
Pharmacy 68
Staff (demographics, provider type) 68
Vital Signs 68
Decision Support System (DSS) National Data Extracts 68
DSS Discharge NDE 69
DSS Treating Specialty ND 69
Outpatient NDE 69
DSS National Pharmacy Extract: 69
Medical SAS datasets 69
Outpatient Medical SAS datasets 69
Inpatient Medical SAS datasets 70
Inpatient Encounter Medical SAS datasets 70
Kaiser Permanente 71
Kaiser Permanente Northern California (KPNC) 72
Chronic Disease Registries 73
SEER-quality KP Northern California Cancer Registry 73
KP Diabetes Registry 73
KP HIV/AIDS Registry 73
KP Asthma 73
KP Coronary Artery Disease 73
KP Congestive Heart Failure 73
KP Diabetes 73
KP Maternal Prenatal Drug/Alcohol Use 73
Inpatient Hospitalizations 73
Ambulatory Visits 74
Outside Referrals and Claims 74
Health plan Membership 74
Pharmacy 74
Patient Demographics 75
Kaiser Permanente Centre for Health Research 75
Kaiser Permanente Georgia Region (KPG) 76
Kaiser Permanente Hawaii 76
Kaiser Permanente Northwest 77
Kaiser Permanente Southern California 77
Indian Health Service (IHS) National Data Repository 78
National Hospital Discharge Survey (NHDS) 80
IMS LifeLink™ PharMetrics plus Database 81
HMO Research Network Virtual Data Warehouse (HMORN VDW) 82
Kaiser Permanente Colorado 83
Kaiser Permanente Southern California 83
Kaiser Permanente Northern California 83
Kaiser Permanente Mid-Atlantic 83
The Centre of Health Research 83
Geisinger Health System 83
Essentia Health 83
Group Health 83
Harvard Pilgrim Health Care 83
Health Partners 83
Henry Ford Health System 83
Marshfield Clinic Security Health Plan of Wisconsin 83
Fallon Community Health Plan Reliant Medical Group 83
Palo Alto Medical Foundation for Healthcare, Research and Education (PAMF) 83
Scott and White Healthcare 83
Fallon Clinic/Reliant Medical Group 84
Lovelace Clinic Foundation (LCF) Quality Research Data Warehouse 85
Demographics 85
Membership Information 85
Geographic Information 85
Inpatient 85
Outpatient 85
Pharmacy Systems 85
Geisinger Health System 86
Geisinger’s Clinical Decision Intelligence System (CDIS) 87
HealthCare Partners Medical Group database 88
United HealthCare Database 89
Medstat’s MarketScan Claims and Encounters 90
New York Department of Health Statewide Planning and Research Cooperate System (SPARCS) 91
Explorys 93
Cerner Health Facts® Database 93
New York State Multiple Sclerosis Consortium database (NYMSC database) 95
The Pacific Northwest Multiple Sclerosis Registry & Network 95
Mexico 95
National Mortality Statistics 95
Encuesta Nacional de la Dinámica Demográfica (ENADID) (National Demographics Survey) 95
South America 96
Argentina 96
Cause-of-Death Records 96
Registro Institucional de Tumores de Argentina (RITA) (Cancer Registry) 97
Brazil 98
DATASUS 98
Primary Care Information System (SIAB) 98
Sistema de Informações Hospitalares (SIH-SUS) (Hospital Systems Data) 99
Sistema de Cadastramento e Acompanhamento de Hipertensos e Diabéticos 99
Mortality Information System (MIS) 100
Europe 101
Austria 101
DIAG-Extranet 101
GAP-DRG (General Approach for Patient oriented Outpatient-based DRG) 102
Austrian National Cancer Registry 103
Cause of Death Statistics 104
Belgium 104
Résumé Clinique Minimum et Résumé Financier Minimum 105
PharmaNet Database 105
Belgium Cancer Registry 106
IMS LifeLink™ Belgian Hospital Disease Database 106
Bulgaria 107
National drug consumption database of the Bulgarian Drug Agency 107
Czech Republic 108
National Register of Hospitalized Patients 108
Czech National Cancer Registry (CNCR) 109
National Register of Cardiac Surgery (NKCHR) 110
National Register of Cardiovascular Interventions (NRKI) 111
National drug consumption database of the State Institute for Drug Control (SUKL) 112
Denmark 113
The Danish National Database of Reimbursed Prescriptions (DNDRP) 113
Danish National Registry of Patients 114
Danish Cancer Registry 115
Psychiatric Central Research Register 116
Danish Twin Registry 117
Danish Education Registers 117
Student Register (SR) 118
Academic Achievement Register (AAR) 118
Population’s Education Register (PER) 118
Adult Education and Continuing Training Register 118
Danish Heart Register 118
Danish Injury Register 119
Danish registers on personal income and transfer payments 120
Danish Multiple Sclerosis Register 120
Estonia 121
The Estonian Health Insurance Fund Administrative Database 121
Health Statistics and Health Research Database 122
Estonian Cancer Registry 122
Estonian Causes of Death Registry 123
The Estonia Health Interview Survey 123
Health Behavior among Estonian Adult Population 124
Finland 125
Finnish National Hospital Discharge Register 126
Kelasto Database (Finnish Prescription Registry) 126
Causes of Death Registry 127
Finnish Cancer Registry 128
Health 2000/2011 Interview Surveys 2000 and 2011 128
France 129
Programme de Médicalisation des Systèmes d’Information (PMSI) 129
Système National d’Information Inter-Régime de l’Assurance Maladie (SNIIR-AM) (National Claims) 130
FRANCIM (French National Cancer Register) 131
ANMS Database 132
Enquête Décennale de Santé 132
Enquête Santé et Protection Sociale (ESPS) 133
European Database for Multiple Sclerosis (EDMUS) 134
Germany 134
German Statutory Health Insurance Claims (SHIs) 134
Core Data 135
Inpatient Data 135
Outpatient Data 135
Prescription Data 135
IMS Disease Analyzer Database 135
Cancer Registry Data 136
WIdO Database 137
Robert Koch Institute (RKI) 138
Health Surveys available through RKI 138
GEDA(German Health Update survey) 138
German Health Interview and Examination Survey for Adults (DEGS) 138
Multiple Sclerosis Registry in Germany 139
Hungary 139
National Health Insurance Fund database (NHIFA) 139
National Drug Consumption Database of the Directorate General of National Institute of Pharmacy 141
Iceland 142
Icelandic National Register of Persons 142
Iceland Cancer Registry 142
Italy 143
OsMed Database 144
The Health Search Database (HSD) 144
Veneto Region Health Services 145
Hospital Discharge Records 146
Drug Dispensing Records 146
Disease-Specific Exemptions from Copayment to Health Care 146
Inhabitant Registry (IR) 146
Servizio Sanitario Regionale Emilia-Romagna 147
Hospital Discharge Records 147
Drug Dispensing Records 147
Inhabitant Registry (IR) 147
Regional Health Agency of Tuscany 148
Hospital Discharge Records 148
Drug Dispensing Records 148
Disease-Specific Exemptions from Copayment to Health Care 148
Inhabitant Registry (IR) 149
Agenzia Regionale Sanitaria Marche 149
Hospital Discharge Records 149
Drug Dispensing Records 149
Disease-Specific Exemptions from Copayment to Health Care 150
Inhabitant Registry (IR) 150
Sicily (Southern Italy) 150
Contact or 150
Hospital Discharge Records 151
Drug Dispensing Records 151
Disease-Specific Exemptions from Copayment to Health Care 151
Inhabitant Registry (IR) 151
Italian Multiple Sclerosis Database Network (MSDN) 152
Latvia 152
National drug consumption database of the State Agency of Medicines of Latvia 152
Statistics Latvia 152
Netherlands 153
Dutch Hospital Data (DHD) 154
Rural Hospital Care Key Register 154
National Medical Registration 154
National Ambulatory Registration 154
Diagnosis-Treatment-Combination Information System 154
Hospital Surveys 154
GIP Database 155
NIVEL Primary Care Database 156
Dutch Cancer Registry 157
PHARMO 158
General Practitioner Database (GPD) 158
Outpatient Pharmacy Database 159
In-patient Pharmacy Database 159
Norway 159
Norwegian Patient Register 159
Norwegian Cancer Registry (NCR) 160
Norwegian Prescription Database (NorPD) 161
Norwegian Cardiovascular Disease Registry 162
Cause of Death Registry 162
The Norwegian Multiple Sclerosis National Competence Centre and National Multiple Sclerosis Registry 163
Poland 163
National Health Fund Database 163
Portugal 164
INFAR Med’s Database 164
Serbia 165
Institute of Public Health 165
Diabetes Registry 165
Cancer Registry 165
Acute Coronary Syndrome 166
National Health Survey 2006 166
Institute of Neurology, Belgrade School of Medicine 166
Spain 166
National Statistics Office Datasets 166
Hospital Morbidity Survey 167
Encuesta Nacional de Salud (National Health Survey) 167
National Vital Statistics 168
FAP (Database for Pharmacoepidemiological Research in Primary Care) 168
DGFPS Database 169
MONICA-Catalonia Study 170
Slovenia 170
Cancer Registry 170
Sweden 171
National Patient Register (NPR) (Hospital Discharge Register) 171
Swedish Cancer Registry (NPR) 173
Drug Prescription Register 174
The Swedish Cause of Death Register 174
IMS LifeLink™ Longitudinal Patient Database in Sweden 175
National Swedish MS Register 176
Switzerland 176
Swiss National Cohort (SNC) 176
Vital Statistics 177
Swiss Health Survey 178
NICER Database 179
Swiss MONICA (Monitoring of trends and determinants in CVD) 180
United Kingdom 181
Clinical Practice Research Data link (CPRD) (formerly General Practice Research Database - GPRD) 181
Diagnosis 181
Procedures 181
Drug data 181
Central Mortality Data 181
Census Data 181
Disease Registries: Cardiovascular Disease, Stroke, Cancer, Diabetes, Epilepsy, Pain, IBD, Dementia, Schizophrenia 181
Health and Social Care Information Centre (HSCIC) 183
Hospital Episode Statistics (HES) 184
Payment by Results data 184
Mental Health Minimum Data Set 184
Cancer Datasets 185
Coronary Heart Disease Data Set 186
HIC (Health Informatics Centre) 186
ISD SMR00 dataset 187
ISD SMR01 dataset 187
ISD SMR04 dataset 188
ISD SMR06 dataset 188
Prescription Data 188
Accident & Emergency (A&E) 188
Ambulatory Holter Monitoring Data 188
ECHO cardiogram set 188
Epidemiology of liver disease in Tayside 189
Heart-disease Evidence-based Audit & Research Tayside Scotland (HEARTS) 189
Renal Register 189
Rheumatoid Arthritis dataset 189
Scottish Care Information - Diabetes Collaboration 189
Stroke Dataset 189
Tayside Allergy & Respiratory Disease Information System (TARDIS) 190
Thyroid Epidemiology, Audit & Research Study (TEARS) 190
GRO Death Certification 190
ISD Scotland 190
Accident and Emergency (A&E2) 191
ACaDMe 191
Data Completeness 191
Outpatients (SMR00) 191
PRISMS 192
The Scottish MS Register 192
The Health Improvement Network (THIN) 192
GPMD (General Practice Morbidity DatabaseProject Wales) 193
Asia 194
China 194
National Central Cancer Registry (NCCR) 196
Chen W, Zheng R, Zhang S, Zhao P, Li G, Wu L, & He J. The incidences and mortalities of major cancers in China, 2009. Chinese Journal of Cancer 2013, 32 (3): 106-112. 196
India 196
Census Data 196
Annual Health Survey 197
Israel 198
Israel National Population Register 198
National hospital services data 199
Israel National Cancer Registry 199
Cause of Death Registry 200
The Maccabi Healthcare Services Clinical Database 201
MS Center Registry at the Sheba Medical Center Hospital 202
Islamic Republic of Iran 202
Iranian MS Society (IMSS) 202
National Death Registry 202
National Cancer Registration 203
Japan 204
Japan Medical Data Center (JMDC) National Claims Database 204
Osaka University Hospital 205
NBD National Claim Database 206
Medical Data Vision 207
JammNet 207
IMS NPA Data 208
Korea 209
Korea National Health insurance claims database 209
Taiwan 210
Taiwan National Health Insurance Research Database (NHIRD) 210
Turkey 211
Turkey Vital Registration 211
TÜRKİYE SAĞLIK ARAŞTIRMASI (Turkey Health Interview Survey) 212
CancerRegistry 212
Africa 213
South Africa 213
Civil Registration 213
Australia and New Zealand 214
Australia 214
Australian Institute of Heath and Welfare (AIHW) 214
National Hospital Morbidity Database (NHMD) 215