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Article History

Received: 13 June 2024

Accepted: 21 August 2024

First Online: 30 August 2024

Declarations

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: The work will be conducted in accordance with the ethical principles underlying the Declaration of Helsinki and good practice guidelines on the proper conduct of research. Ethical approval for Stage 2a has been granted by University of Sheffield (REF 059571), approval for Stages 2b and 3 are pending.The primary output of this research will be a condition-specific PROM for assessing HRQoL in plwALS, and associated value set for use in cost-effectiveness evaluations. The results of the project will be disseminated via at least two journal manuscripts (i.e., development of the PROQuALS, and deriving utility weights). Informed consent will be obtained from participants for all stages of the project.

: JC has received research income through NIHR-funded Better Outcomes in MND project (paid to institution). PP has received research income through NIHR-funded Better Outcomes in MND project (paid to institution). DR has received research income through NIHR-funded Better Outcomes in MND project (paid to institution) and is a member of the EuroQol group. CW has received research income through NIHR-funded Better Outcomes in MND project (paid to institution). AWG has received research income through NIHR-funded Better Outcomes in MND project (paid to institution). EH has no competing interests. CM has received research income through NIHR-funded Better Outcomes in MND project (paid to institution).