Data Dictionary: European Network of Centres for Pharmacoepidemiology and Pharmacovigilance

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	Experience in secondary research/meta-analysis	Experience with data sources	Available Registry/ies	Experience in research collaborations as	Interest in research funded
	Austria	University based	Epidemiologist/ Pharmacoepidemiologist	Anaesthesia	Cohort Study	Yes	Capacity to conduct face-to-face interviews - in a clinic	Yes	Hospital Discharge	Drug Registry/ies	Principal Investigator	By pharmaceutical companies
	Belgium	Hospital based	Statistician	Cardiovascular diseases	Case Control Study	No	Capacity to conduct face-to-face interviews - in the community	No	Longitudinal Prescription Data - US	Disease Registry/ies	Collaborating Investigator	By charities
	Bulgaria	Government based	Clinician	Congenital Malformations	Drug Utilisation		Electronic data capture systems		ALS Register - Amyotrophic Lateral Sclerosis	Other		By government
	Croatia	Charity or non-profit organisation	Clinical Pharmacologist	Devices	Interventional Clinical Trial		Interactive voice response systems		APEX COPD Registry			By research councils
	Cyprus	For profit organisation	Pharmacist	Disorders of the central nervous system	Meta-Analysis		Call centre		ARS			By EU funding schemes
	Czechia	Other	Geneticist/ Pharmacogeneticist	Ear, nose and oropharynx disorders	Other				ASTOR - Alport Syndrome
	Denmark		IT Specialist	Endocrine disorders					BIFAP
	Estonia		Ethics expertise	Eye disorders					BIKER
	European Union		Legal expertise	Gastrointestinal tract					BSRBR - Rheumatic and Musculoskeletal conditions
	Finland		Regulatory expertise	Geriatrics					BioReg-Austria
	France		Other	Gynaecology					CONQUEST - COPD
	Germany			Immunological products and vaccines					COST-GnRH gonadotropin-releasing hormone deficienc
	Greece			Immunosuppression					CPRD
	Hungary			Infectious diseases					Calliope
	Iceland			Liver disease					Caserta database
	Ireland			Malignant disease					ChILD-EU - Children Interstitial lung diseases
	Italy			Musculoskeletal and joint diseases					CureDRPLA Global Patient Registry - DRPLA
	Latvia			Neonates					DA Germany
	Liechtenstein			Nutrition and blood					DAPI database
	Lithuania			Osteoporosis					DHR
	Luxembourg			Paediatrics					DKCC - Skin Cancer
	Malta			Poisoning/Overdose					Danish Registries (access/analysis)
	Netherlands			Pregnancy					Dravet-SCN1A-PCHD19 Registy
	Norway			Psychiatry					Drugs and Pregnancy Finland
	Poland			Renal impairment					E-HOD
	Portugal			Respiratory diseases					E-IMD
	Romania			Skin disorders					EBMT
	Slovakia			Urinary tract disorders					ECARUCA - Chromosomal aberrations
	Slovenia			Other					ECFSPR - Cystic Fibrosis
	Spain								ECMN - Mastocytosis
	Sweden								EDMUS - Multiple Sclerosis
	Switzerland								EFEMERIS
	United Kingdom (Northern Ireland)								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