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Breathing support in ALS: what it means for patients and families

NCT ID NCT05744310

NEW Knowledge-focused Sponsor: Haukeland University Hospital 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Sep 21, 2026 · Last updated Sep 21, 2026

Summary

ALS is a rapidly progressive nerve disease with no cure, and extending breathing support into later stages raises hard questions about quality of life. Researchers in Norway are following 200 ALS patients, their partners and their children with questionnaires before and after long-term ventilation begins. The study compares those who choose the treatment with those who decline it, tracking overall, health-related and disease-specific quality of life. The goal is to give clinicians and families better information for one of the most difficult decisions in ALS care.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
long-term mechanical ventilation support
What this could lead to
If the study clarifies how ventilation affects daily life, it could help ALS patients and families weigh the trade-offs of life-sustaining treatment with clearer information.
What could go wrong
This is an observational questionnaire study, so it cannot prove that ventilation causes any change in quality of life. Answers may reflect only the experiences of Norwegian families who chose or declined the treatment.

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.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

About 200 people

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

Started

Apr 2023

Expected to finish

Aug 2032

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.

Ages

8 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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.

Inclusion criteria for patients: 1. A clinical diagnosis of probable ALS according to the revised El Escorial criteria 2. Progression of the illness leading the consulting physician to offer treatment with LTMV 3. Can communicate in Norwegian Inclusion criteria for partners of ALS patients: 1. Partner of a patient with ALS with progression of the illness leading the consulting physician to offer treatment with LTMV 2. Can communicate in Norwegian Inclusion criteria for children: 1. Children from 8 years and older having a parent who suffers from ALS with progression of the illness leading the consulting physician to offer treatment with LTMV 2. Can communicate in Norwegian Exclusion criteria for patients, partners and children of ALS patients: 1\. Potential participants with cognitive impairment or dementia.

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis motor neuron disorder nervous system disorder neurodegenerative disease spinal cord disorder TDP-43 proteinopathy

As listed by the trial registrant

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

Amyotrophic lateral sclerosis Motor neuron disease Nervous system diseases Neurodegenerative diseases Spinal cord diseases TDP-43 proteinopathies

How to take part

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

  1. The places running it

    9 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

  • Akershus University Hospital

    RECRUITING

    Lørenskog, Norway

  • Haukeland University Hospital

    RECRUITING

    Bergen, Norway

  • Nordland Hospital Bodø

    RECRUITING

    Bodø, Nordland, 8005, Norway

  • Oslo University Hospital

    RECRUITING

    Oslo, Norway

  • St. Olavs Hospital

    RECRUITING

    Trondheim, Norway

  • Stavanger University Hospital

    RECRUITING

    Stavanger, Norway

  • Sørlandet Hospital Trust

    RECRUITING

    Kristiansand, Vest Agder, Norway

  • Universitetssykehuset Nord-Norge

    RECRUITING

    Tromsø, Norway

  • Østfold Hospital Kalnes

    NOT_YET_RECRUITING

    Sarpsborg, 1714, Norway

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