How to establish and sustain a disease registry: insights from a qualitative study of six disease registries in the UK

Abstract Background The advent of new chronic conditions such as long COVID-19 raises the question of whether and, if so, how best to establish new disease registries for such conditions. Prompted by the potential need for a long COVID-19 registry, we examined experiences of existing UK disease regi...

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Bibliographic Details
Main Authors: Edmund Stubbs, Josephine Exley, Raphael Wittenberg, Nicholas Mays
Format: Article
Language:English
Published: BMC 2024-11-01
Series:BMC Medical Informatics and Decision Making
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Online Access:https://doi.org/10.1186/s12911-024-02775-x
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