What do ALS patients and their families really need? new study aims to find out.
NCT ID NCT07302321
First seen Jan 05, 2026 · Last updated May 18, 2026 · Updated 20 times
Summary
This study surveys 208 ALS patients who carry the C9orf72 mutation and their caregivers. The goal is to learn about their care, home support, and quality of life so that better help can be offered. No new treatment is tested; instead, the study gathers information to guide future improvements.
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the original study
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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IRCCS Fondazione Mondino, Istituto Neurologico Nazionale a Carattere Scientifico
NOT_YET_RECRUITINGPavia, Italy
Contact Email: •••••@•••••
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IRCCS Ospedale San Raffaele
NOT_YET_RECRUITINGMilan, Italy
Contact Email: •••••@•••••
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Istituto Auxologico Italiano IRCCS
RECRUITINGMilan, Lombardy, 20145, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
Explore the condition pages connected to this study.