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Survey aims to uncover hidden struggles of ALS patients and caregivers

NCT ID NCT07302321

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

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 208 people

The number the study aims to enrol. It can still change while the study runs.

Started

Oct 2025

Expected to finish

Jun 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

ALS patients with mutation C9orf72 (C9Pos) and their caregivers

Ages

18 years and older

Sex

Anyone

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

ALS Patients: Inclusion Criteria: * Diagnosis of ALS with mutation C9orf72 (C9Pos) * Age 18 years or older * Fluency in Italian language * Ability to understand the nature of the study and to reply to the questions in the online survey * Informed consent signed Exclusion Criteria: * Clinically relevant cognitive dysfunction * Incapacity to reply to at least half of the questions of the online survey * Hospital Anxiety and Depression Scale (HADS) ≥ 11 Caregivers: Inclusion Criteria: * Caregiver of patient with diagnosis of ALS with mutation C9orf72 (C9Pos), who participates in this study * Age 18 years or older * Preserved cognitive functions * Informed consent signed

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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

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    3 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

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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