Survey aims to uncover hidden struggles of ALS patients and caregivers

NCT ID NCT07302321

Recruiting now Knowledge-focused Sponsor: Istituto Auxologico Italiano Source: ClinicalTrials.gov ↗

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

AMYOTROPHIC LATERAL SCLEROSIS

Contacts and locations

Locations

IRCCS Fondazione Mondino, Istituto Neurologico Nazionale a Carattere Scientifico
NOT_YET_RECRUITING

Pavia, Italy
IRCCS Ospedale San Raffaele
NOT_YET_RECRUITING

Milan, Italy
Istituto Auxologico Italiano IRCCS
RECRUITING

Milan, Lombardy, 20145, Italy

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