Optimizing INITIation of non invasive ventilation in ALS patients

Recruiting

• Conditions: Amyotrophic Lateral Sclerosis; Motor neuron disease; 10029317

• Registration Number: NL-OMON54861
• Lead Sponsor: niversitair Medisch Centrum Groningen

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Last Update Posted: 29 April 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: Not specified
• Target Recruitment: 250

Inclusion Criteria

Age > 18 years
Patients with diagnosis of ALS, PLS or PSMA visiting the HMC centre for the
first time
Ability to give informed consent.
Ability to fill in the questionnaires independently or with assistance of a
caregiver.

Exclusion Criteria

Use of non invasive ventilation or invasive ventilation (tracheostomy) at time
of first visit to a HMV centre.
Pregnancy

Study & Design

• Study Type: Observational non invasive
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
<p>Primary study outcome is quality of life based on questionairre ALSAQ-40<br /><br>The primary objective of this study is to build a predictive model in which we<br /><br>can identify which (pheno) type of ALS patients has the most benefit from NIV<br /><br>in improving or maintaining quality of life.</p><br>

Secondary Outcome Measures

Name	Time	Method
<p>-Determine the opinion of ALS patients who started NIV about the quality of the<br /><br>preparation prior to the initiation of NIV, the timing of the initiation of NIV<br /><br>and the effect of NIV.<br /><br>- Determine the reasons for not starting NIV or ending NIV.<br /><br>- Determine the effect of NIV on survival in patients with different ALS<br /><br>phenotypes.<br /><br>- Determine how QoL changes over time in both cohort 1 and 2</p><br>