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Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force.

Rima NabboutGalliano ZanelloDixie BakerLora BlackIsabella BrambillaOrion J BuskeLaurie S ConklinElin Haf DaviesDaria JulkowskaYeonju KimThomas KlopstockHarumasa NakamuraKim G NielsenAnne R PariserJose Carlos PastorMaurizio ScarpaMaureen SmithDomenica TaruscioStephen Groft
Published in: Orphanet journal of rare diseases (2023)
Through this analysis, the Task Force identified key elements that should support both developing and established clinical research networks for rare diseases in implementing the appropriate structures to achieve international interoperability worldwide. A global roadmap of actions and a specific research agenda, as suggested by this group, provides a platform to identify common goals between these networks.
Keyphrases
  • electronic health record
  • high resolution
  • quality improvement
  • public health
  • network analysis