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(CONTINUATION) RESOURCE TYPE - CENTRE |
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| Experience in secondary research/ meta-analysis |
Experience with data sources |
Available Registry/ies |
Experience in research collaborations as |
Interest in research funded
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| Yes |
Hospital Discharge |
Drug Registry/ies |
Principal Investigator |
By pharmaceutical companies
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| No |
Longitudinal Prescription Data - US |
Disease Registry/ies |
Collaborating Investigator |
By charities
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ALS Register - Amyotrophic Lateral Sclerosis |
Other |
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By government
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APEX COPD Registry |
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By research councils
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ARS |
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By EU funding schemes
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ASTOR - Alport Syndrome |
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BIFAP |
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BIKER |
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BSRBR - Rheumatic and Musculoskeletal conditions |
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BioReg-Austria |
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CONQUEST - COPD |
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COST-GnRH gonadotropin-releasing hormone deficienc |
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CPRD |
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Calliope |
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Caserta database |
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ChILD-EU - Children Interstitial lung diseases |
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CureDRPLA Global Patient Registry - DRPLA |
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DA Germany |
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DAPI database |
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DHR |
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DKCC - Skin Cancer |
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Danish Registries (access/analysis) |
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Dravet-SCN1A-PCHD19 Registy |
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Drugs and Pregnancy Finland |
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E-HOD |
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E-IMD |
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EBMT |
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ECARUCA - Chromosomal aberrations |
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ECFSPR - Cystic Fibrosis |
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ECMN - Mastocytosis |
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EDMUS - Multiple Sclerosis |
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EFEMERIS |
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EHDN - REGISTRY |
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EHR - Blood disorder |
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EMBARC |
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ENCALS - Amyotrophic lateral sclerosis |
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EPCOT - Blood disorders |
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ERCUSYN (European Register on Cushing's Syndrome) |
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ESID Registry |
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ESPN/ERA-EDTA - Children Renal Replacement Therapy |
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EU-CHS - Central Hypoventilation Syndromes |
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EUGINDAT-PIADATABASE - Primary inherited aminoacid |
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EUHANET - Haemophilia |
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EUHASS - Blood disorders |
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EULAR COVAX Registry |
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EULAR COVID-19 Registry |
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EUMDS - Myelodysplastic Syndrome |
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EURAP-Epilepsy and pregnancy |
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EUROCAT |
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EUROFEVER |
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EUROMAC |
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EUROPAC - Pancreatic diseases and cancer |
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EUROTRAPS - Autoinflammatory diseases |
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EUROmediCAT |
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EUReMS - Multiple Sclerosis |
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Electronic Medical Records Data (Ambulatory) - US |
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Emilia Romagna GPs drug prescription |
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Enroll-HD |
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EpiChron Cohort |
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EudraVigilance |
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Euro WABB - rare genetic disorders |
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European Porphyria Registry (EPR) |
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European Prader-Willi syndrome database |
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European registry of alveolar echinococcosis |
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EurêClark registry-Systemic Capillary Leak Syndrom |
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FTLD Register - Frontotemporal lobar degeneration |
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Fabry registry - Fabry disease |
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FranceCoag - Haemophilia |
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GalNet |
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GePaRD |
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Gecem inventory |
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German CF Registry |
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German MS-Register |
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Global COL6 Patient Registry |
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Global FKRP Registry - LGMDR9 |
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HAE |
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HBV Registry |
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HDIN - Hepatitis D |
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HEIS |
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HES |
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HIS |
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HUE-MAN Project - Alpha mannosidosis |
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Health Search/CSD LPD |
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HemoNED - Haemophilia |
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Hepather - Hepatitis B and C |
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Hospital CDM-US |
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IADB |
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ICRS - Cartilage Damage |
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IMASIS |
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IMS - Hospital Treatment Insights - UK |
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IMS LifeLink : Longitudinal Prescription Data - Ja |
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IMS LifeLink: Dx data - US |
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IMS LifeLink: Hospital Disease Database - Belgium |
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IMS LifeLink: Longitudinal Prescription Data - Aus |
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IMS LifeLink: PharMetrics Plus - US |
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IMS LifeLink:Longitudinal Prescription Data - Bel |
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IMS LifeLink:Longitudinal Prescription Data-Spain |
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IMS MedMap® - Canada |
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INBC - Blood disorders |
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INPDR |
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IPCI |
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ISAR |
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Icelandic National Registries |
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Irish CF Registry |
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LPUH-Drug Registry |
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LifeLink EMR FR |
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LifeLink Health Plan US |
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Longitudinal Prescription Data - Canada |
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Longitudinal Prescription Data - Netherlands |
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Longitudinal Prescription Data(LRx) -France |
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MIS |
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MTM & CNM Patient Registry |
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MediGuard.org |
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NCRI - Oncology |
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NCRI_PCRS database |
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NFZ |
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NorPD |
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Norwegian Porphyria Registry |
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Norwegian wholesaler-based drug statistics |
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OPCRDA |
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OPED |
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Optimum Patient Care Research Database (OPCRD) |
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PARADIGHM registry - Chronic Hypoparathyroidism |
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PHARM |
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PHARMO Data Network |
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POMME |
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PPLS-LPUH |
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PROGNOSIS |
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PedNet |
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Pedianet |
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Pharmachild - Juvenile idiopathic arthritis (JIA) |
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Prescription Claims Data - Canada |
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QResearch |
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R-LIVER rare liver disease registry |
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RABBIT |
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RBD Network - Blood disorders and rare diseases |
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RD-Connect |
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REHem-AR-SEHOP |
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ROR Centro - Oncology |
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ROR Sul - Oncology |
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RORENO - Oncology |
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Reuma.pt - Rheumatic diseases Portuguese Registry |
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SAIL databank |
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SCETIDE - Primary Immune deficiencies |
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SIDIAP |
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SMArtCARE |
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Save Sight Registries |
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Sylvia Lawry Centre for MS Research Registry |
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THAOS registry - Transthyretin Amyloidosis |
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THIN |
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TREAT-NMD |
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TREATgermany-AD (Atopic Dermatitis) Registry |
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Telotron - Telomera |
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The Swedish prescribed drug register |
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The UK FSHD Patient Registry |
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The WFH Gene Therapy Registry |
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UK CF Registry |
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UK Duchenne and Becker |
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UK Myotonic Dystrophy Patient Registry |
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UK National Neonatal Research Database |
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UK Renal Registry - Renal diseases |
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UK SMA Patient Registry |
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UKHCDO - Haemophilia |
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UKMSR |
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World Bleeding Disorders Registry |
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X-ALD - X-linked adrenoleukodystrophy |
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aHUS Registry |
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eDRIS |
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epidEMcat - Multiple sclerosis |
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Other |
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