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Dissemination Strategy

The EPIRARE survey has a threefold strategy of questionnaire dissemination:

  • direct link to the questionnaire:
    a link to the questionnaire is sent to the coordinators of network registers with the request to fill in the questionnaire and forward it to the collaborating registers. The link is also sent to “key” persons among public health authorities, RD patient’s associations

  • invitation to a predefined email recipient:
    a link to the questionnaire is sent to a list of register holders gathered through available
    registers lists (Orphanet, Treat NMD, HQIP, DGSanco, DGResearch, EURORDIS)

  • link to the questionnaire on the EPIRARE site
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