Farrar, Michelle A.
Carey, Kate A.
Paguinto, Sarah-Grace
Kasparian, Nadine A.
De Abreu Lourenço, Richard
Funding for this research was provided by:
Sydney Children's Hospital Foundation (Research Grant)
Motor Neurone Disease Research Institute of Australia (152324)
Article History
First Online: 8 April 2020
Compliance with Ethical Standards
:
: Support for this research was provided by a Sydney Children’s Hospital Foundation research Grant. The funding source did not have a role in the study design, collection, analysis, and interpretation of the data, in the writing of the article, or in the decision to submit it for publication.
: Associate Professor Farrar has served on the scientific advisory board for Biogen and received grant support from the Motor Neurone Diseases Research Institute of Australia Beryl Bayley MND Postdoctoral Fellowship (152324). Professor Kasparian is the recipient of a National Heart Foundation of Australia Future Leader Fellowship (101229) and a 2018–2019 Harkness Fellowship in Health Care Policy and Practice from the Commonwealth Fund. Dr Carey, Ms Paguinto and Associate Professor De Abreu Lourenço have no conflicts of interest that are directly relevant to the content of this article.
: This study was conducted in accordance with the principles of the 1964 Declaration of Helsinki and its later amendments. The institutional review boards, the Sydney Children’s Hospitals Network Human Research Ethics Committee and the University of Technology Sydney Human Research Ethics Committee approved the study (HREC/17/SCHN/227, ETH17-1967).
: All participants provided written informed consent to participate in the focus groups and for the coded data of their focus groups to be used for analysis and submitted for publication.
: The data are not publicly available because they contain information that could compromise interviewees’ privacy and consent.