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Key challenges for patient registries – A report from the 1st workshop of the EHC Think Tank Workstream on Registries

Amanda Bok

Amanda Bok

European Haemophilia ConsortiumBrussels, Belgium
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Bok, Amanda
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Declan Noone

Declan Noone

European Haemophilia ConsortiumBrussels, Belgium
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Noone, Declan
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Naja Skouw-Rasmussen

Naja Skouw-Rasmussen

European Haemophilia ConsortiumBrussels, Belgium
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Skouw-Rasmussen, Naja
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Ehc Think Tank

Ehc Think Tank

European Haemophilia ConsortiumBrussels, Belgium
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Tank, Ehc Think
  
09. März 2022
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Artikel-Kategorie: Systems Change
Online veröffentlicht: 09. März 2022
Seitenbereich: 14 - 19
DOI: https://doi.org/10.2478/jhp-2022-0002
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© 2022 Amanda Bok et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
As tools that aid the understanding of bleeding disorders and the individuals who live with them, patient registries make a vital contribution to the development of care. In an age of novel technologies, it is essential that they are able to support research, assessment and safety monitoring in the longer term.© Shutterstock
As tools that aid the understanding of bleeding disorders and the individuals who live with them, patient registries make a vital contribution to the development of care. In an age of novel technologies, it is essential that they are able to support research, assessment and safety monitoring in the longer term.© Shutterstock

Figure 1

Template for identifying challenges for patient registries
Template for identifying challenges for patient registries
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