Amyotrophic lateral sclerosis Nervous System Diseases
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: 1. Diagnosis of ALS 2. Subjects of either sex aged 18 years or over 3. Stage 3 or 4 ALS 4. Capable of understanding the information given and giving fully informed consent prior to any study specific procedures 5. Willing for the study team to contact patient’s GP about the study
Exclusion criteria
Exclusion criteria: 1. Patients at high risk of A&E admission for respiratory care unrelated to ALS because of underlying respiratory disease 2. Any patient involved in another study in which an intervention is designed to improve diaphragmatic function 3. Refusal of palliative care 4. Impaired cognition as judged by clinician
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Number of inappropriate hospital admissions from A&E, in ALS patients, at 12 months | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Reduction in morbidity or mortality associated with high dose oxygen use in ALS will be measured by determining the difference between arms of the number clinical incidents associated with high dose oxygen use 2. Tolerability of the smartphone app system in participants of the intervention arm will be compared at 3, 6, 9 and 12 months, for user and app generated data 3. Feasibility will be measured by the differences between user and App generated logs of A&E visits at 3, 6, 9 and 12 months and examination of the quality and usability of disease-progression data collected | — |
Countries
England, United Kingdom