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The most common PC information needs were as follows for patients, disease course/prognosis (n = 1, general disease information (n = 9), decision-making (n = 7) and symptoms (n = 6); for caregivers, services and resources (n = 15), disease course/prognosis (n = 14), general disease information (n = 13) and skills (n = 1. There was substantial variability in information needs, both between patients and caregivers and among members of the same group. ALS patients and caregivers have unique and varying PC information needs. Future research should b