Survey on the collection of data on adverse events related to medicinal products through registries

ENCePP Code of conduct

No

Data sources

• Data source(s):
  Advancing the Patient Experience in Chronic Obstructive Pulmonary Disease (COPD) Registry

  UK Renal Registry

  Advancing the Patient Experience in Chronic Obstructive Pulmonary Disease (COPD) Registry

  European patient registry on TRAPS syndrome

  REGISTRY: a study by the European Huntington’s Disease Network

  Hepatitis Delta International Network (HDIN) - Patient Registry

  British Society for Rheumatology Biologics Register for Rheumatoid Arthritis

  PHARMACOVIGILANCE IN JUVENILE IDIOPATHIC ARTHRITIS PATIENTS (PHARMACHILD) TREATED WITH BIOLOGIC AGENTS AND/OR METHOTREXATE.

  Advancing the Patient Experience in Chronic Obstructive Pulmonary Disease (COPD) Registry

  UK Cystic Fibrosis Registry

  ERN RARE-LIVER prospective research registry

  German Atopic Dermatitis Registry TREATgermany

  Danish registries (access/analysis)

  European network of population-based registries for the epidemiological surveillance of congenital anomalies

  EUROmediCAT central database

  Deutsches Hämophilieregister

  Portugal North Region Cancer Registry

  FranceCoag

  European registry and network for intoxication type metabolic diseases

  EURAP International Registry of Antiepileptic Drugs and Pregnancy

  Biologika in der Kinderrheumatologie

  European Network and Registry for Homocystinurias and Methylation Defects - E-HOD

  The European Clarkson’s syndrome registry

  The PRES European Network of Registries for Autoinflammatory Diseases in Childhood

  MS-Register of the National MS-Society of Germany (DMSG, Bundesverband e.V.)
• Data source(s), other:
  Drugs and Pregnancy Finland, EUHASS - Blood disorders, EBMT, EUMDS - Myelodysplastic Syndrome, HUE-MAN Project - Alpha mannosidosis, SCETIDE - Primary Immune deficiencies, UK SMA Patient Registry, UK Duchenne and Becker, EurêClark registry-Systemic Capillary Leak Syndrom, ECFSPR - Cystic Fibrosis, ESPN/ERA-EDTA - Children Renal Replacement Therapy, ECARUCA - Chromosomal aberrations, EUROFEVER, ECMN - Mastocytosis, ChILD-EU - Children Interstitial lung diseases, COST-GnRH gonadotropin-releasing hormone deficienc, E-IMD, Euro WABB - rare genetic disorders, EURAP-Epilepsy and pregnancy, Icelandic National Registries, BIKER, Reuma.pt - Rheumatic diseases Portuguese Registry, E-HOD, EUHANET - Haemophilia, epidEMcat - Multiple sclerosis, ROR Centro - Oncology, RORENO - Oncology, ROR Sul - Oncology, German MS-Register, ICRS - Cartilage Damage, Sylvia Lawry Centre for MS Research Registry, PedNet, THAOS registry - Transthyretin Amyloidosis, HemoNED - Haemophilia, FranceCoag - Haemophilia, UKHCDO - Haemophilia, Hepather - Hepatitis B and C, Fabry registry - Fabry disease, DHR, ENCALS - Amyotrophic lateral sclerosis, INBC - Blood disorders, ALS Register - Amyotrophic Lateral Sclerosis, FTLD Register - Frontotemporal lobar degeneration, NCRI - Oncology, ERCUSYN (European Register on Cushing's Syndrome), PARADIGHM registry - Chronic Hypoparathyroidism, APEX COPD Registry, UK CF Registry, World Bleeding Disorders Registry, ASTOR - Alport Syndrome, R-LIVER rare liver disease registry, TREATgermany-AD (Atopic Dermatitis) Registry, Norwegian Porphyria Registry, Danish Registries (access/analysis), EUROCAT, Drugs and Pregnancy Finland, EUROmediCAT, PROGNOSIS, EBMT, HAE, European Porphyria Registry (EPR), ESID Registry, EUHASS - Blood disorders, BSRBR - Rheumatic and Musculoskeletal conditions, Pharmachild - Juvenile idiopathic arthritis (JIA), EDMUS - Multiple Sclerosis, EHR - Blood disorder, EPCOT - Blood disorders, UK Renal Registry - Renal diseases, EUMDS - Myelodysplastic Syndrome, EUROPAC - Pancreatic diseases and cancer, EUROTRAPS - Autoinflammatory diseases, European registry of alveolar echinococcosis, X-ALD - X-linked adrenoleukodystrophy, EHDN - REGISTRY, European Prader-Willi syndrome database, HDIN - Hepatitis D
• Data sources (types):
  Disease registry

  Drug registry

  Electronic healthcare records (EHR)

Use of a Common Data Model (CDM)

• CDM mapping:
  No

Data quality specifications

• Check conformance:
  Unknown
• Check completeness:
  Unknown
• Check stability:
  Unknown
• Check logical consistency:
  Unknown

Data characterisation

• Data characterisation conducted:
  No