Amyotrophic Lateral Sclerosis, Motor neuron disease
Conditions
Interventions
none
Sponsors
Universitair Medisch Centrum Groningen
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
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
Exclusion criteria: Use of non invasive ventilation or invasive ventilation (tracheostomy) at time of first visit to a HMV centre. Pregnancy
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Primary study outcome is quality of life based on questionairre ALSAQ-40 The primary objective of this study is to build a predictive model in which we can identify which (pheno) type of ALS patients has the most benefit from NIV in improving or maintaining quality of life. | — |
Secondary
| Measure | Time frame |
|---|---|
| -Determine the opinion of ALS patients who started NIV about the quality of the preparation prior to the initiation of NIV, the timing of the initiation of NIV and the effect of NIV. - Determine the reasons for not starting NIV or ending NIV. - Determine the effect of NIV on survival in patients with different ALS phenotypes. - Determine how QoL changes over time in both cohort 1 and 2 | — |
Countries
Netherlands
Contacts
Public ContactR. Jaspers Focks
Roessingh Centrum voor Revalidatie
Outcome results
None listed