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