Tappenden, Paul http://orcid.org/0000-0001-6612-2332
Hardiman, Orla http://orcid.org/0000-0003-2610-1291
Kwon, Sun-Hong http://orcid.org/0000-0002-1058-8392
Mon-Yee, Mon http://orcid.org/0009-0001-6921-7529
Galvin, Miriam http://orcid.org/0000-0002-8232-8020
McDermott, Christopher http://orcid.org/0000-0002-1269-9053
,
Funding for this research was provided by:
EU Joint Programme – Neurodegenerative Disease Research
Article History
Accepted: 9 May 2024
First Online: 31 May 2024
Declarations
:
: This work has been funded by the Joint Programme in Neurodegeneration (JPND, ALS-CarE), Science Foundation Ireland (20/SP/8953, PRECISION ALS), The Iris O’Brien Foundation (MG), Research Motor Neurone (MG), the Irish Motor Neurone Disease Association, and the National Institute for Health and Care Research. CJM is supported by the NIHR Sheffield BRC and an NIHR Research Professorship (NIHR301648).
: None of the authors have any conflicts of interest to declare.
: The individual patient data from ALS-CarE cannot be made publicly available for reasons of privacy and confidentiality. However, access to de-identified datasets can be made available on request to Mr Mark Heverin mark.heverin@tcd.ie. The economic model is fully replicable from the information reported in this paper. The executable model is available from the authors upon request.
: All European study sites obtained ethical approval from their own Institutional Review Boards to allow them to collect information locally. This approval took account of the international collaborative nature of the study and how the data were to be analysed by the ALS-CarE consortium.
: Not applicable.
: Paul Tappenden, Orla Hardiman, Miriam Galvin, Chris McDermott conceptualised and designed the study. All authors contributed to the development and analysis. All authors contributed to writing the manuscript. All authors read and approved the final version. The ALS-CarE Study Group consortia provided support over the course of the study, including in data collection, cleaning and analysis.