UnknownNot Applicable

Telemonitoring in NIV MND (OptNIVent)

15 participantsStarted 2022-04-25

Plain-language summary

This is a feasibility study of telemonitoring system for people with MND/ALS, who are on NIV, via a call centre operated by a local clinical commissioning group.

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria (Patients): * Confirmed diagnosis of MND with respiratory muscle weakness * Adults who are capable of informed consent * Patients for whom we anticipate survival of 6 months or more * Able to communicate with an interviewer. Alternative communication methods will be used as required in order to mitigate communication difficulties. Exclusion Criteria (Patients): * Patients who have declined NIV

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Acceptability - Qualitative data through semi-structured interviews and focus groups

Timeframe: Qualitative data will be conducted at 3-month

Usability - Qualitative data through semi-structured interviews and focus groups

Timeframe: Qualitative data will be conducted at 3-month

Trial details

NCT IDNCT05299372

SponsorLiverpool University Hospitals NHS Foundation Trust

Sponsor typeOTHER_GOV

Study typeINTERVENTIONAL

Primary completion2022-10-31

Contact for this trial

Hikari Ando, PhD

0151529 hikari.ando@nhs.net

View on ClinicalTrials.gov More Motor Neuron Disease, Amyotrophic Lateral Sclerosis trials

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.