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 |
