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Completed

NCT Number: NCT04652401

Quality of Life in Ventilator-dependant Neuromuscular Patients

This study aims at evaluating the quality of life of patients with slowly progressive neuromuscular disorders who are dependant on mechanical ventilation (daily usage ≥ 16h).

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Key information

Conditions

Neuromuscular Diseases Nervous System Diseases Noninvasive Ventilation Pathologic Processes Pathological Conditions, Signs and Symptoms Quality of Life Respiration Disorders Respiration, Artificial Respiratory Aspiration Respiratory Tract Diseases Tracheostomy

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

AFM Téléthon

Évry, France

Who can participate

Healthy volunteers accepted: No

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

Inclusion criteria

  • Patients with slowly progressive neuromuscular disorder (NMD), non walking
  • Patients dependant on mechanical ventilation (daily usage ≥ 16h) for at least 1 year before inclusion
  • Aged ≥ 18 yo
  • Consent for participation
  • Affiliated to a social security regime

Exclusion criteria

  • Patients with medically non-stable NMD: fever, acute respiratory infection, organ decompensation
  • Patients with significant cognitive impairment (inability to read and/or incomprehension of questions)
  • Patients with fast-evolving neuromuscular disease
  • Patients declining to participate in the study
  • Patients under guardianship and/or trusteeship
  • Pregnant women

Treatment and study plan

Primary outcomes

  1. Score of the Severe Respiratory Insufficiency questionnaire (SRI)

    Time frame: 1 Day

    Higher score represents better quality of life

  2. Score of the Quality of Life Measure for people with slowly progressive and genetic neuromuscular disease questionnaire (QoL-gNMD)

    Time frame: 1 Day

    Higher score represents better quality of life

Sponsors and collaborators

Lead sponsor

Centre d'Investigation Clinique et Technologique 805

Other

Collaborators

  • AFM Téléthon
  • FilNeMus
  • Fondation Garches

Registry information

Official study title

Assessment of Quality of Life and Its Determinants in Ventilator-dependent Patients With Slowly Progressive Neuromuscular Disease

Acronym: EqualVENT

Important dates

Study start
2020
Primary completion
2021
Study completion
2021
First posted
Dec 3, 2020
Registry last updated
Feb 9, 2022

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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