ALS Amyotrofic Lateral Sclerosis
Conditions
Interventions
None listed
Sponsors
Universitair Medisch Centrum Utrecht
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: 1. 18 years or older 2. Diagnosed with motor neuron disease (MND): amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) or primary lateral sclerosis (PLS). 3. Able to perform a respiratory function test with or without caregiver assistance
Exclusion criteria
Exclusion criteria: 1. Tracheostomy Ventilation 2. Severe cognitive impairment
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The mean difference between the supervised VC*s and the self-assessed VC*s, and the standard deviation of the difference (validity). | — |
Secondary
| Measure | Time frame |
|---|---|
| - Within patient variability of the self-assessed VC during follow-up (reliability). - Feasibility of a 4-weekly home-monitoring protocol. o Adherence: number of completed home assessments divided by total number of home assessments. o Acceptability: Patients* perspectives on the burden, frequency and difficulty of the home assessments. | — |
Countries
Netherlands
Outcome results
None listed