EncoreAnywhere use in motor neurone disease

Monitoring and promoting adherence to non-invasive ventilation in motor neurone disease using EncoreAnywhere telemonitoring

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN17560073

Enrollment

Registered

2016-02-10

Start date

2016-01-22

Completion date

Unknown

Last updated

2016-10-17

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Topic: Dementias and neurodegeneration

Interventions

Participants are randomly allocated to one of two groups using computerised 1:1 block randomisation. Participants in both groups are given instructions to use NIV, which involves wearing a face mask

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Aged 18 years and over 2. Patients with motor neurone disease diagnosed by a consultant neurologist 3. Patients receiving care from the Sheffield Teaching Hospitals NHS Trust MND clinic 4. Patients with respiratory failure diagnosed by the clinical team 5. Determined to be suitable for and willing to commence non-invasive ventilation including the EncoreAnywhere features as part of their usual care at the Royal Hallamshire Hospital MND clinic

Exclusion criteria

Exclusion criteria: 1. Patients already established on non-invasive ventilation e.g. in obstructive sleep apnoea 2. Those with no mobile internet reception in their homes (required to use EncoreAnywhere) 3. Patients unable to give informed consent

Design outcomes

Primary

Measure	Time frame
Adherence to NIV is measured using data collected from automatically from the EncoreAnywhere system at 3 months.	—

Secondary

Measure	Time frame
1. Adherence to NIV is measured using data collected from automatically from the EncoreAnywhere system at 1, 2, 4, 8 and 12 weeks 2. Efficacy of NIV: 2.1. Number of episodes of leak or obstruction collected from automatically from the EncoreAnywhere system at 1, 2, 4, 8 and 12 weeks 2.2. Patient satisfaction/perception of service delivery is measured using a patient questionnaire designed for the study at 3 months 2.3. NIV tolerance is measured using a patient questionnaire designed for the study at 1 and 3 months 2.4. Presence of symptoms are measured using a patient questionnaire designed for the study at 1 and 3 months 2.5. Quality of life using patient questionnaire RAND-36 at 3 months 2.6. Daytime arterial PaCO2 and PaO2 using information collected from clinical notes at 3 months 2.7. Home nocturnal PaCO2 and PaO2 average, mean and episodes of desaturation is measured using TOSCA at 1 and 3 3. Recruitment and retention rates: 3.1. Adherence to data collection points collected from study records at 3 months 3.2. Standard deviation of primary outcome measure (to predict sample size for future evaluation) at 3 months	—

Measure

Time frame

1. Adherence to NIV is measured using data collected from automatically from the EncoreAnywhere system at 1, 2, 4, 8 and 12 weeks 2. Efficacy of NIV: 2.1. Number of episodes of leak or obstruction collected from automatically from the EncoreAnywhere system at 1, 2, 4, 8 and 12 weeks 2.2. Patient satisfaction/perception of service delivery is measured using a patient questionnaire designed for the study at 3 months 2.3. NIV tolerance is measured using a patient questionnaire designed for the study at 1 and 3 months 2.4. Presence of symptoms are measured using a patient questionnaire designed for the study at 1 and 3 months 2.5. Quality of life using patient questionnaire RAND-36 at 3 months 2.6. Daytime arterial PaCO2 and PaO2 using information collected from clinical notes at 3 months 2.7. Home nocturnal PaCO2 and PaO2 average, mean and episodes of desaturation is measured using TOSCA at 1 and 3 3. Recruitment and retention rates: 3.1. Adherence to data collection points collected from study records at 3 months 3.2. Standard deviation of primary outcome measure (to predict sample size for future evaluation) at 3 months

—

Countries

United Kingdom

Contacts

Public ContactEsther Hobson

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026