Needs of ALS patients with C9orf72 mutation and their caregivers
Part of Brain & nervous system, Hormones & metabolism clinical trials.
This study asks people with ALS who have a specific genetic change (C9orf72) and their caregivers to fill out an online survey. It aims to better understand their needs so that support can be improved.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You have ALS and a confirmed C9orf72 gene mutation, or you are a caregiver for someone who does
- You are 18 years old or older
- You are fluent in Italian
- You can understand the study and answer questions in an online survey
- You do not have serious cognitive problems that would make it hard to participate
- You are not currently experiencing severe anxiety or depression (as measured by a standard screening)
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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