Data Dictionary: European Network of Centres for Pharmacoepidemiology and Pharmacovigilance
From Beacon
| RESOURCE TYPE - CENTRE | |||||||
|---|---|---|---|---|---|---|---|
| Name of Centre | Country | Category | Centre resources | Therapeutic/disease area(s) | Experience with study design(s) | Experience in direct data collection | Available data collection resources |
| Austria | University based | Epidemiologist/ Pharmacoepidemiologist | Anaesthesia | Cohort Study | Yes | Capacity to conduct face-to-face interviews - in a clinic | |
| Belgium | Hospital based | Statistician | Cardiovascular diseases | Case Control Study | No | Capacity to conduct face-to-face interviews - in the community | |
| Bulgaria | Government based | Clinician | Congenital Malformations | Drug Utilisation | Electronic data capture systems | ||
| Croatia | Charity or non-profit organisation | Clinical Pharmacologist | Devices | Interventional Clinical Trial | Interactive voice response systems | ||
| Cyprus | For profit organisation | Pharmacist | Disorders of the central nervous system | Meta-Analysis | Call centre | ||
| Czechia | Other | Geneticist/ Pharmacogeneticist | Ear, nose and oropharynx disorders | Other | |||
| Denmark | IT Specialist | Endocrine disorders | |||||
| Estonia | Ethics expertise | Eye disorders | |||||
| European Union | Legal expertise | Gastrointestinal tract | |||||
| Finland | Regulatory expertise | Geriatrics | |||||
| France | Other | Gynaecology | |||||
| Germany | Immunological products and vaccines | ||||||
| Greece | Immunosuppression | ||||||
| Hungary | Infectious diseases | ||||||
| Iceland | Liver disease | ||||||
| Ireland | Malignant disease | ||||||
| Italy | Musculoskeletal and joint diseases | ||||||
| Latvia | Neonates | ||||||
| Liechtenstein | Nutrition and blood | ||||||
| Lithuania | Osteoporosis | ||||||
| Luxembourg | Paediatrics | ||||||
| Malta | Poisoning/Overdose | ||||||
| Netherlands | Pregnancy | ||||||
| Norway | Psychiatry | ||||||
| Poland | Renal impairment | ||||||
| Portugal | Respiratory diseases | ||||||
| Romania | Skin disorders | ||||||
| Slovakia | Urinary tract disorders | ||||||
| Slovenia | Other | ||||||
| Spain | |||||||
| Sweden | |||||||
| Switzerland | |||||||
| United Kingdom (Northern Ireland) |
| (CONTINUATION) RESOURCE TYPE - CENTRE | ||||
|---|---|---|---|---|
| Experience in secondary research/ meta-analysis | Experience with data sources | Available Registry/ies | Experience in research collaborations as | Interest in research funded |
| Yes | Hospital Discharge | Drug Registry/ies | Principal Investigator | By pharmaceutical companies |
| No | Longitudinal Prescription Data - US | Disease Registry/ies | Collaborating Investigator | By charities |
| ALS Register - Amyotrophic Lateral Sclerosis | Other | By government | ||
| APEX COPD Registry | By research councils | |||
| ARS | By EU funding schemes | |||
| ASTOR - Alport Syndrome | ||||
| BIFAP | ||||
| BIKER | ||||
| BSRBR - Rheumatic and Musculoskeletal conditions | ||||
| BioReg-Austria | ||||
| CONQUEST - COPD | ||||
| COST-GnRH gonadotropin-releasing hormone deficienc | ||||
| CPRD | ||||
| Calliope | ||||
| Caserta database | ||||
| ChILD-EU - Children Interstitial lung diseases | ||||
| CureDRPLA Global Patient Registry - DRPLA | ||||
| DA Germany | ||||
| DAPI database | ||||
| DHR | ||||
| DKCC - Skin Cancer | ||||
| Danish Registries (access/analysis) | ||||
| Dravet-SCN1A-PCHD19 Registy | ||||
| Drugs and Pregnancy Finland | ||||
| E-HOD | ||||
| E-IMD | ||||
| EBMT | ||||
| ECARUCA - Chromosomal aberrations | ||||
| ECFSPR - Cystic Fibrosis | ||||
| ECMN - Mastocytosis | ||||
| EDMUS - Multiple Sclerosis | ||||
| EFEMERIS | ||||
| EHDN - REGISTRY | ||||
| EHR - Blood disorder | ||||
| EMBARC | ||||
| ENCALS - Amyotrophic lateral sclerosis | ||||
| EPCOT - Blood disorders | ||||
| ERCUSYN (European Register on Cushing's Syndrome) | ||||
| ESID Registry | ||||
| ESPN/ERA-EDTA - Children Renal Replacement Therapy | ||||
| EU-CHS - Central Hypoventilation Syndromes | ||||
| EUGINDAT-PIADATABASE - Primary inherited aminoacid | ||||
| EUHANET - Haemophilia | ||||
| EUHASS - Blood disorders | ||||
| EULAR COVAX Registry | ||||
| EULAR COVID-19 Registry | ||||
| EUMDS - Myelodysplastic Syndrome | ||||
| EURAP-Epilepsy and pregnancy | ||||
| EUROCAT | ||||
| EUROFEVER | ||||
| EUROMAC | ||||
| EUROPAC - Pancreatic diseases and cancer | ||||
| EUROTRAPS - Autoinflammatory diseases | ||||
| EUROmediCAT | ||||
| EUReMS - Multiple Sclerosis | ||||
| Electronic Medical Records Data (Ambulatory) - US | ||||
| Emilia Romagna GPs drug prescription | ||||
| Enroll-HD | ||||
| EpiChron Cohort | ||||
| EudraVigilance | ||||
| Euro WABB - rare genetic disorders | ||||
| European Porphyria Registry (EPR) | ||||
| European Prader-Willi syndrome database | ||||
| European registry of alveolar echinococcosis | ||||
| EurêClark registry-Systemic Capillary Leak Syndrom | ||||
| FTLD Register - Frontotemporal lobar degeneration | ||||
| Fabry registry - Fabry disease | ||||
| FranceCoag - Haemophilia | ||||
| GalNet | ||||
| GePaRD | ||||
| Gecem inventory | ||||
| German CF Registry | ||||
| German MS-Register | ||||
| Global COL6 Patient Registry | ||||
| Global FKRP Registry - LGMDR9 | ||||
| HAE | ||||
| HBV Registry | ||||
| HDIN - Hepatitis D | ||||
| HEIS | ||||
| HES | ||||
| HIS | ||||
| HUE-MAN Project - Alpha mannosidosis | ||||
| Health Search/CSD LPD | ||||
| HemoNED - Haemophilia | ||||
| Hepather - Hepatitis B and C | ||||
| Hospital CDM-US | ||||
| IADB | ||||
| ICRS - Cartilage Damage | ||||
| IMASIS | ||||
| IMS - Hospital Treatment Insights - UK | ||||
| IMS LifeLink : Longitudinal Prescription Data - Ja | ||||
| IMS LifeLink: Dx data - US | ||||
| IMS LifeLink: Hospital Disease Database - Belgium | ||||
| IMS LifeLink: Longitudinal Prescription Data - Aus | ||||
| IMS LifeLink: PharMetrics Plus - US | ||||
| IMS LifeLink:Longitudinal Prescription Data - Bel | ||||
| IMS LifeLink:Longitudinal Prescription Data-Spain | ||||
| IMS MedMap® - Canada | ||||
| INBC - Blood disorders | ||||
| INPDR | ||||
| IPCI | ||||
| ISAR | ||||
| Icelandic National Registries | ||||
| Irish CF Registry | ||||
| LPUH-Drug Registry | ||||
| LifeLink EMR FR | ||||
| LifeLink Health Plan US | ||||
| Longitudinal Prescription Data - Canada | ||||
| Longitudinal Prescription Data - Netherlands | ||||
| Longitudinal Prescription Data(LRx) -France | ||||
| MIS | ||||
| MTM & CNM Patient Registry | ||||
| MediGuard.org | ||||
| NCRI - Oncology | ||||
| NCRI_PCRS database | ||||
| NFZ | ||||
| NorPD | ||||
| Norwegian Porphyria Registry | ||||
| Norwegian wholesaler-based drug statistics | ||||
| OPCRDA | ||||
| OPED | ||||
| Optimum Patient Care Research Database (OPCRD) | ||||
| PARADIGHM registry - Chronic Hypoparathyroidism | ||||
| PHARM | ||||
| PHARMO Data Network | ||||
| POMME | ||||
| PPLS-LPUH | ||||
| PROGNOSIS | ||||
| PedNet | ||||
| Pedianet | ||||
| Pharmachild - Juvenile idiopathic arthritis (JIA) | ||||
| Prescription Claims Data - Canada | ||||
| QResearch | ||||
| R-LIVER rare liver disease registry | ||||
| RABBIT | ||||
| RBD Network - Blood disorders and rare diseases | ||||
| RD-Connect | ||||
| REHem-AR-SEHOP | ||||
| ROR Centro - Oncology | ||||
| ROR Sul - Oncology | ||||
| RORENO - Oncology | ||||
| Reuma.pt - Rheumatic diseases Portuguese Registry | ||||
| SAIL databank | ||||
| SCETIDE - Primary Immune deficiencies | ||||
| SIDIAP | ||||
| SMArtCARE | ||||
| Save Sight Registries | ||||
| Sylvia Lawry Centre for MS Research Registry | ||||
| THAOS registry - Transthyretin Amyloidosis | ||||
| THIN | ||||
| TREAT-NMD | ||||
| TREATgermany-AD (Atopic Dermatitis) Registry | ||||
| Telotron - Telomera | ||||
| The Swedish prescribed drug register | ||||
| The UK FSHD Patient Registry | ||||
| The WFH Gene Therapy Registry | ||||
| UK CF Registry | ||||
| UK Duchenne and Becker | ||||
| UK Myotonic Dystrophy Patient Registry | ||||
| UK National Neonatal Research Database | ||||
| UK Renal Registry - Renal diseases | ||||
| UK SMA Patient Registry | ||||
| UKHCDO - Haemophilia | ||||
| UKMSR | ||||
| World Bleeding Disorders Registry | ||||
| X-ALD - X-linked adrenoleukodystrophy | ||||
| aHUS Registry | ||||
| eDRIS | ||||
| epidEMcat - Multiple sclerosis | ||||
| Other |
| RESOURCE TYPE - NETWORK | ||
|---|---|---|
| Name of network | Therapeutic/ disease area(s) | Geographical coverage |
| Anaesthesia | European Economic Area (EEA/EFTA) | |
| Cardiovascular diseases | Austria | |
| Congenital Malformations | Belgium | |
| Devices | Bulgaria | |
| Disorders of the central nervous system | Croatia | |
| Ear, nose and oropharynx disorders | Cyprus | |
| Endocrine disorders | Czechia | |
| Eye disorders | Denmark | |
| Gastrointestinal tract | Estonia | |
| Geriatrics | European Union | |
| Gynaecology | Finland | |
| Immunological products and vaccines | France | |
| Immunosuppression | Germany | |
| Infectious diseases | Greece | |
| Liver disease | Hungary | |
| Malignant disease | Iceland | |
| Musculoskeletal and joint diseases | Ireland | |
| Neonates | Italy | |
| Nutrition and blood | Latvia | |
| Osteoporosis | Liechtenstein | |
| Paediatrics | Lithuania | |
| Poisoning/Overdose | Luxembourg | |
| Pregnancy | Malta | |
| Psychiatry | Netherlands | |
| Renal impairment | Norway | |
| Respiratory diseases | Poland | |
| Skin disorders | Portugal | |
| Urinary tract disorders | Romania | |
| Other | Slovakia | |
| Slovenia | ||
| Spain | ||
| Sweden | ||
| Switzerland | ||
| United Kingdom (Northern Ireland) | ||
| Non EEA Europe (excluding Russia & former Soviet Republics) | ||
| Russia & former Soviet Republics | ||
| Middle East | ||
| Asia | ||
| North America | ||
| Central America & Caribbean | ||
| South America | ||
| Africa | ||
| Australia & Oceania |
| RESOURCE TYPE - DATA SOURCE | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Name of data source | Type of data source | Licensed medicinal products | Type of dictionary | Events | Geographical origin of data | Data collection region | Age groups | Additional patient information | Linkage to other data sources | Data access charge |
| Disease/case registry | None | ATC Code (5th level) | No events | European Economic Area (EEA/EFTA) | Nation-wide | 17 years and under [Paediatrics] | Clinical information from treating physician | Yes | Yes | |
| Spontaneous reporting database | Hospital data | Other dictionaries | Adverse events (for pharmacovigilance databases) | Austria | Regional sub-set | preterm newborn infants | Questionnaire data from the patient | No | No | |
| Prescription event monitoring | Community / general practice data | Symptoms/signs | Belgium | term newborn infants (0 to 27 days) | Genetic information or samples | |||||
| Administrative database, e.g. claims database | OTC | Diagnosis in primary care | Bulgaria | infants and toddlers (28 days to 23 months) | ||||||
| Routine primary care electronic patient registry | Vaccines | Specialist diagnosis | Croatia | children (2 to 11 years) | ||||||
| Exposure registry | Other | Discharge diagnosis | Cyprus | adolescents (12 to 17 years) | ||||||
| Pharmacy dispensing database | Laboratory values | Czechia | 18 to 45 years | |||||||
| Prospective studies database | Death | Denmark | 46 to 64 years | |||||||
| Case-control surveillance database | Procedures | Estonia | 65 years and over | |||||||
| Other | Overdoses | European Union | 65 to 75 years | |||||||
| Teratogenic events | Finland | 76 years and over | ||||||||
| Specific event | France | |||||||||
| Germany | ||||||||||
| Greece | ||||||||||
| Hungary | ||||||||||
| Iceland | ||||||||||
| Ireland | ||||||||||
| Italy | ||||||||||
| Latvia | ||||||||||
| Liechtenstein | ||||||||||
| Lithuania | ||||||||||
| Luxembourg | ||||||||||
| Malta | ||||||||||
| Netherlands | ||||||||||
| Norway | ||||||||||
| Poland | ||||||||||
| Portugal | ||||||||||
| Romania | ||||||||||
| Slovakia | ||||||||||
| Slovenia | ||||||||||
| Spain | ||||||||||
| Sweden | ||||||||||
| Switzerland | ||||||||||
| United Kingdom (Northern Ireland) | ||||||||||
| Non EEA Europe (excluding Russia & former Soviet Republics) | ||||||||||
| Russia & former Soviet Republics | ||||||||||
| Middle East | ||||||||||
| Asia | ||||||||||
| North America | ||||||||||
| Central America & Caribbean | ||||||||||
| South America | ||||||||||
| Africa | ||||||||||
| Australia & Oceania |
