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Health service research for rare diseases is challenging for quantitative researchers in many ways. This talk aims to share experience on how health service studies were conducted with the Australian and New Zealand Fontan registry for patients born with single-ventricle congenital heart defect. Studies on hospital inpatient resources use, out-of-hospital Medicare resources use, and others were included.

About Li

Dr Huang conducts research in areas related to child health and subjective wellbeing. Her methodological work focuses on estimating the monetary value of non-market goods. She specializes in conducting economic evaluations alongside clinical and community trials and examining unfair inequalities in healthcare use. She has participated in the design and teaching of four highly sought-after health economics short courses. During 2017-2019 she held a dedicated consulting role at the Murdoch Children’s Research Institute of the Royal Children’s Hospital, advising clinicians to incorporate Health Economics into clinical studies.