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

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

Abstract Background Many patients with rare diseases are still lacking a timely diagnosis and approved therapies for their condition despite the tremendous efforts of the research community, biopharmaceutical, medical device industries, and patient support groups. The development of clinical researc...

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Bibliographic Details
Main Authors: Rima Nabbout, Galliano Zanello, Dixie Baker, Lora Black, Isabella Brambilla, Orion J. Buske, Laurie S. Conklin, Elin Haf Davies, Daria Julkowska, Yeonju Kim, Thomas Klopstock, Harumasa Nakamura, Kim G. Nielsen, Anne R. Pariser, Jose Carlos Pastor, Maurizio Scarpa, Maureen Smith, Domenica Taruscio, Stephen Groft
Format: Article
Language:English
Published: BMC 2023-05-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare diseases
Clinical research networks
Interoperability
Patient unmet needs
Diagnosis
Therapies
Online Access:https://doi.org/10.1186/s13023-023-02650-4

Internet

https://doi.org/10.1186/s13023-023-02650-4

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