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S2Ola avatar S2Ola commented on May 30, 2024

Metadata of registry:

  • General information:
    - Acronym
    - Medical area
    - Type of Registry
    - Other type
    - Description
    - Registry is member of Eurocat?
    - Website
    - Sponsors

  • Rare diseases
    - Name of the disease
    - Registry information
    - Institution
    - Facility
    - Department
    - Street & number
    - Postcode City
    - Country

  • Responsible for the registry
    - Contact person
    - Position
    - E-Mail address
    - Phone number

  • Biobanks
    - Biobank name
    - Registry of biobanks
    - Biobank identifier

  • Additional components
    - Name of the component
    - Component described in Relationship component-registry

from resource-metadata-schema.

S2Ola avatar S2Ola commented on May 30, 2024

List of ERN Registries:
Network Name | Description

  1. ERN BOND | European Reference Network on bone disorders
  2. ERN CRANIO | European Reference Network on craniofacial anomalies and ear, nose and throat (ENT) disorders
  3. Endo-ERN | European Reference Network on endocrine conditionsm
  4. ERN EpiCARE | European Reference Network on epilepsies
  5. ERKNet | European Reference Network on kidney diseases
  6. ERN-RND | European Reference Network on neurological diseases
  7. ERNICA | European Reference Network on inherited and congenital anomalies
  8. ERN LUNG | European Reference Network on respiratory diseases
  9. ERN Skin | European Reference Network on skin disorders
  10. ERN EURACAN | European Reference Network on adult cancers (solid tumours)
  11. ERN EuroBloodNet | European Reference Network on haematological diseases
  12. ERN eUROGEN | European Reference Network on urogenital diseases and conditions
  13. ERN EURO-NMD | European Reference Network on neuromuscular diseases
  14. ERN EYE | European Reference Network on eye diseases
  15. ERN GENTURIS | European Reference Network on genetic tumour risk syndromes
  16. ERN GUARD-HEART | European Reference Network on diseases of the heart
  17. ERN ITHACA | European Reference Network on congenital malformations and rare intellectual disability
  18. MetabERN | European Reference Network on hereditary metabolic disorders
  19. ERN PaedCan | European Reference Network on paediatric cancer (haemato-oncology)
  20. ERN RARE-LIVER | European Reference Network on hepatological diseases
  21. ERN ReCONNET | European Reference Network on connective tissue and musculoskeletal diseases
  22. ERN RITA | European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases
  23. ERN TRANSPLANT-CHILD | European Reference Network on Transplantation in Children
  24. VASCERN | European Reference Network on Rare Multisystemic Vascular Diseases

from resource-metadata-schema.

rajaram5 avatar rajaram5 commented on May 30, 2024

Not a relevant issue for this repository

from resource-metadata-schema.

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