Survey aims to uncover hidden struggles of ALS patients and caregivers
NCT ID NCT07302321
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study uses surveys to learn about the care, needs, and quality of life of people with ALS who have the C9orf72 mutation, as well as their caregivers. Researchers want to find out what support is missing and how to improve daily life for both groups. About 208 participants will be enrolled in Italy.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this could identify specific ways to improve care and support for ALS patients with the C9orf72 mutation and their caregivers.
What could go wrong
This is an observational survey study, not a treatment trial. It will not directly test any therapy, so it cannot lead to a cure or new drug.
Disclaimer
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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.
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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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
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: •••••@•••••