Developing monitoring tools for people living with MND

Developing monitoring tools for People living with MND

UK Chief Investigator

Emma Hodson-Tole

Research summary

The rapid, debilitating progression of MND makes it challenging to provide personalised, timely decisions for optimal care and limits how well the effects of new potential treatments can be evaluated in clinical trials. One barrier to improving both these important features of MND is a lack of methods to sensitively, frequently and unobtrusively measure changes in health as the disease progresses.

Technology advances mean that unobtrusive methods of recording our physical behaviour patterns, as we go about our daily life activities, are now widely available. Such activity monitoring is based on recording the body’s accelerations to provide measures such as: sitting (sedentary) and active time and how often we move between sitting and standing. It is known that these measures can indicate the progression and response to treatment in neurodegenerative diseases, like Parkinson’s Disease. However, to date only two studies have explored the use of such measures in People living with MND (PlwMND).

The project will therefore investigate whether MND causes unique changes in physical behaviour that can be used to identify if a person is living with MND, the stage of the disease, and investigate whether changes in physical behaviour can be used to predict how quickly the disease will progress in an individual. People living with MND will be asked, on 5 occasions (3 months apart), to: i) wear a small sensor for 7 days; ii) complete questionnaires recording features of health and well-being; iii) have muscle properties and mobility measured. These data will be compared to a large set of data we have already collected from healthy people (more than 130 people aged 19–84 years), using a combination of traditional and Artificial Intelligence data analysis methods. Improving knowledge of the effects of MND in the real world will enable more personalised care decisions and new treatments to be thoroughly evaluated. 

Current status

Open to recruitment

Recruitment target

50 participants in the UK

Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search) 

Recruitment groups

• Patients with MND

Locations

• Salford (Principal Investigator: Amina Chaouch)

• Sheffield (Principal Investigator: Chris McDermott)

Information about study sites

Contact details

Emma Hodson-Tole, email: e.tole@mmu.ac.uk

Key dates

Recruitment opening date: 17 November 2023

Planned recruitment end date: 01 October 2026

Inclusion / exclusion criteria

Inclusion criteria:

•  Adults who are 18 years of age or older, there is no upper age limit

• Diagnosed with probable or definite MND (El Escorial criteria), regardless of initial clinical presentation

• Able to walk for at least 5 m at time of initial enrolment to the study

• Capable of giving informed consent or designating a third party (e.g., friend, family member or carer), independent to the research team, to sign the informed consent sheet on their behalf if they give consent but are not able to write or provide a signature

• Must be proficient in the English language

Exclusion criteria:

• People under the age of 18 years 

• People for whom MND diagnosis is uncertain

• Unable to walk 5 m, at time of initial enrolment to the study

• Incapable of providing informed consent or designating third party (independent of the research team) to sign on their behalf if they are unable to write

• Allergy to adhesives used in wound dressings/plasters or sensitive/damaged skin in the area of the mid-thigh (on or near the location the accelerometer device will be secured)

• Insufficient knowledge of the English language 

Funder

Motor Neurone Disease Association (MNDA)

Sponsor

Manchester Metropolitan University

Study design

Observational