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  • What to measure in biliary atresia research: study protocol for developing a core outcome set.

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    Griffin507745-Published.pdf (314.5Kb)
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    Version of Record (VoR)
    Author(s)
    Maguire, Christopher
    Tyack, Zephanie
    Kimble, Roy M
    Griffin, Bronwyn Ruth
    Yesberg, Helen Joanna
    Choo, Fang Ming
    McBride, Craig Antony
    Griffith University Author(s)
    Griffin, Bronwyn R.
    McBride, Craig
    Year published
    2021
    Metadata
    Show full item record
    Abstract
    AIM: Extrahepatic biliary atresia is a rare disorder. This creates challenges in the quality and quantity of research conducted. This issue is exacerbated by the potential heterogeneity in the reported outcomes in research examining the management of biliary atresia. A core outcome set is required to standardise reporting on the management of biliary atresia in research, facilitate systematic reviews that include outcomes of greatest importance to patients and clinicians, and to evaluate the quality of the existing evidence base on the management of biliary atresia. METHODS: A list of all potential outcomes will be developed ...
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    AIM: Extrahepatic biliary atresia is a rare disorder. This creates challenges in the quality and quantity of research conducted. This issue is exacerbated by the potential heterogeneity in the reported outcomes in research examining the management of biliary atresia. A core outcome set is required to standardise reporting on the management of biliary atresia in research, facilitate systematic reviews that include outcomes of greatest importance to patients and clinicians, and to evaluate the quality of the existing evidence base on the management of biliary atresia. METHODS: A list of all potential outcomes will be developed through a systematic review of the literature. This list will be refined through a three-stage Delphi approach, involving key stakeholders in the management of biliary atresia. This will include patients and their parents, clinicians, nurses and allied health professionals. In this way, outcomes will be prioritised into a set of consensus core outcomes. CONCLUSION: The development of a core outcome set in biliary atresia management is needed to guide future research and assist in evaluating the quality of existing research. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Children's Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC), Ref: HREC/20/QCHQ/62448. Results of the study will be published in an open access format.
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    Journal Title
    BMJ Open
    Volume
    11
    Issue
    8
    DOI
    https://doi.org/10.1136/bmjopen-2020-047224
    Copyright Statement
    © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
    Subject
    Clinical sciences
    hepatology
    paediatric hepatobiliary surgery
    surgery
    Publication URI
    http://hdl.handle.net/10072/407159
    Collection
    • Journal articles

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