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

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

The Journal of Haemophilia Practice

Volume 9 (2022): Issue 1 (January 2022)

By: Amanda Bok , Declan Noone , Naja Skouw-Rasmussen and Ehc Think Tank

Open Access

|Mar 2022

Figures & Tables

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

Template for identifying challenges for patient registries

DOI: https://doi.org/10.2478/jhp-2022-0002 | Journal eISSN: 2055-3390

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Language: English

Page range: 14 - 19

Published on: Mar 9, 2022

Published by: Haemnet Ltd

In partnership with: Paradigm Publishing Services

Publication frequency: 1 issue per year

Keywords:

Bleeding disorders,

Patient-reported health data,

Systems change,

Related subjects:

Basic medical science,

Basic medical science, other,

Clinical medicine,

Clinical medicine, other,

© 2022 Amanda Bok, Declan Noone, Naja Skouw-Rasmussen, Ehc Think Tank, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

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