QALYs and rare diseases: exploring the responsiveness of SF-6D, EQ-5D-5L and AQoL-8D following genomic testing for childhood and adult-onset rare genetic conditions in Australia

QALYs and rare diseases: exploring the responsiveness of SF-6D, EQ-5D-5L and AQoL-8D following genomic testing for childhood and adult-onset rare genetic conditions in Australia

Abstract Background Genomic testing transforms the diagnosis and management of rare conditions. However, uncertainty exists on how to best measure genomic outcomes for informing healthcare priorities. Using the HTA-preferred method should be the starting point to improve the evidence-base. This stud...

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Dades bibliogràfiques
Autors principals:	Tianxin Pan, You Wu, James Buchanan, Ilias Goranitis
Format:	Article
Idioma:	English
Publicat:	BMC 2023-12-01
Col·lecció:	Health and Quality of Life Outcomes
Matèries:	Personal utility Patient-reported outcome measures Genomic sequencing Rare disease Responsiveness
Accés en línia:	https://doi.org/10.1186/s12955-023-02216-9

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