Development in Home Mechanical Ventilation for Patient With Amyotrophic Lateral Sclerosis.

The aims of the study are to calculate the positive predictive value (PPV) of the codes for home mechanical noninvasive and invasive ventilation in patients with Amyotrophic lateral sclerosis in Denmark, and to describe the initial clinical characteristics of patients with ALS and invasive and noninvasive HMV between 2012 and 2026. Moreover, the study will describe the national development of home mechanical ventilation for patient with ALS, including calculating the incidence, prevalence and mortality of the the patients with invasive HMV. .

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Key information

Conditions

Amyotrophic Lateral Sclerosis Central Nervous System Diseases Home Mechanical Ventilation Metabolic Diseases Motor Neuron Disease Nervous System Diseases Neurodegenerative Diseases Neuromuscular Diseases Nutritional and Metabolic Diseases Proteostasis Deficiencies Spinal Cord Diseases TDP-43 Proteinopathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Patients with at least two hospital contacts from 2012 and 2026 with an ALS diagnosis
Patients with one hospital contacts from 2012 and 2026 with a diagnosis or procedure codes related to mechanical ventilation
Patients with one hospital contacts from 2012 and 2026 with a process marker related to mechanical ventilation (SKS, sundhedsklassifikationssystem)

Exclusion criteria

None

Treatment and study plan

Primary outcomes

Positive predictive value of HMV codes for invasive HMV

Time frame: 2012-2025
Positive predictive value of HMV codes for non-invasive HMV

Time frame: 2012-2025

Study contacts

Contact information is provided by the study sponsor or research team.

Anne Kathrine Staehr-rye, MD, Ph.D

CONTACT

[email protected]

004528665645

Sponsors and collaborators

Lead sponsor

Rigshospitalet, Denmark

Other

Registry information

Important dates

Study start: 2026
Primary completion: 2027
Study completion: 2027
First posted: Sep 15, 2026
Registry last updated: Sep 15, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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