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104.1 The caregiver experience in amyotrophic lateral sclerosis (ALS): a mixed-methods study to examine the lived experience of caring for people living with ALS and to develop a novel ALS Caregiver Impact Questionnaire (ALS-CIQ) William Nowell 1 , Nadine McGale 2 , Oren Levy 1 , Sarah Wilding 2 , Phoebe Heinrich 2 , Nick Patel 1 , Jinsy Andrews 3 , Diana Rofail 1 1 Regeneron Pharmaceuticals, Inc., Tarrytown, New York, USA, 2 Modus Outcomes, Cambridge, Massachusetts, USA, 3 Department of Neurology, Colombia University, New York, USA Journal of Patient-Reported Outcomes 2026 , 10(Suppl 1) :104.1 Aims This study aimed to develop a conceptualization of the personal experience of caregivers of people living with amyotrophic lateral sclerosis (pALS), and a novel instrument to assess caregiver impact