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ENROL EpiBlood Documents

The ENROL Registry Module for the Collection of annual counts of patients with RHDs - EpiBlood has been developed to systematically collect standardized information on the annual counts of patients with RHDs through a secured REDCap system.

Each ERN-EuroBloodNet center is required to respond to the surveys of the subnetworks where the center is nationally recognized as ERN Member or Affiliated Partner. However, the opportunity to contribute is also extended to other subnetworks.

Aiming to facilitate your contribution to this action, we have created the following documents:

EpiBlood Documents Details of the documents
Handbook

Provides information about the ENROL EpiBlood strategy and detailed instructions on how to contribute through the REDCap system.

Annex 1 Includes survey templates with the variables to be collected for the six subnetworks on the 72 Disease Groups of Rare Hematological Disorders.
Disease Groups

Composed of two sheets:

  • EpiBlood_72 Disease Groups_List: Contains the list of the 72 Disease Groups of Rare Hematological Disorders distributed across the six subnetworks.
  • EpiBlood_72 DiseaseGroups_ORPHA: Provides detailed information about the specific diseases included in each Disease Group based on the ORPHANET classification.

Do not hesitate to contact maximo.tartaglia(ELIMINAR)@vhir.org for any requests.

Euro Blood Net