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CompletedInterventional

A study aiming to reduce diagnostic delays of motor neurone disease within primary care in the UK using an automated electronic red flag alert tool

This study is testing a new computer tool, MND Alert, in GP practices across the UK. Motor neurone disease (MND) is a serious condition that can be hard to diagnose early, leading to delays. The MND Alert tool checks patient records for signs of MND and lets doctors know, so they can refer patients to specialists sooner. The study involves two parts: first, using the tool for six months in GP practices, and then asking doctors for their feedback. Researchers want to see if the tool helps identify MND earlier and whether doctors find it useful in their daily work. This could mean quicker diagnoses and better care for people with MND.

At a glance

Status
Completed
Sponsor
University of Sheffield
Enrolment target
20
Start
20 Aug 2025
Estimated completion
30 Mar 2026

What is this study about?

This study is looking at a new computer system called MND Alert, which is designed to help doctors (GPs) in the UK spot motor neurone disease (MND) more quickly. MND is a rare and serious condition that affects about 5,000 people in the UK. It causes muscles to gradually weaken, making it hard to move, talk, swallow, and eventually breathe. Because MND is rare, GPs might not always recognise it straight away, which means it can take a long time – sometimes over two years – for someone to get a diagnosis after their first symptoms.

To help with this, the MND Alert system builds on a previous checklist of MND symptoms for GPs. This new system is an automated tool that works within the electronic patient records at GP surgeries. It scans these records for specific warning signs of MND and then lets the GP know if it finds something concerning. The aim is to help doctors identify potential MND cases earlier so they can refer patients to specialists more quickly. This study will involve using the MND Alert system in up to 30 GP practices for six months, and then talking to the GPs to understand their experiences and if the tool was helpful.

The main goal of this research is to see if the MND Alert system is effective and practical for everyday use in GP practices. If successful, it could significantly cut down the time it takes for people to get a diagnosis of MND, which is really important for starting treatment and support sooner. The study is run by Sheffield Institute for Translational Neuroscience (SITraN) and funded by Lifearc and the MND Association.

Key takeaways

  • The study aims to help GPs diagnose MND faster using a new computer tool.
  • MND Alert checks patient records for signs of motor neurone disease.
  • It's a study for GP practices and their doctors, not directly for patients.
  • Faster diagnosis can lead to earlier support and treatment for MND.
  • Patient data shared will be anonymous to protect privacy.

Who may be eligible?

This study isn't looking for patients to take part directly, but rather GP practices and their doctors. For a GP practice to be involved, it needs to be located in South Yorkshire and willing to install the MND Alert tool into their existing computer systems (specifically either SystmOne or EMIS Web patient records).

The practices also need to agree to share some patient information, but this will be made anonymous so individuals can't be identified. They must also allow researchers to look at patient records where the MND Alert tool has flagged something, and regularly share feedback and data from the tool.

For individual doctors to take part in the second stage of the study, they need to work at one of the participating practices, speak English, and be happy to share their experiences with the MND Alert tool in an interview. These interviews can be done in person or over the phone/video call.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

  1. Is your GP practice located in South Yorkshire?
  2. Does your GP practice use SystmOne or EMIS Web computer systems?
  3. Is your GP practice willing to install and use a new computer tool?
  4. Is your GP willing to share anonymous patient data for research?
  5. Is your GP willing to talk about their experiences with a new tool?
Answer every question to see your result.

What does participation involve?

This study is for GP practices, not for patients. If your GP practice is taking part, the MND Alert tool will be automatically running in the background of their computer system. It will highlight potential MND-related symptoms during your GP's consultations. The doctors from these practices will then be invited to have a 60-minute interview to discuss how they found using the MND Alert tool.

Potential risks and benefits

For GPs participating, a clear benefit is helping to develop a tool that could significantly speed up the diagnosis of motor neurone disease, potentially improving care for many patients. There are no known risks for GPs taking part in this study. For patients, there are no direct risks as the study only involves GPs using the tool and sharing anonymised data, not direct patient involvement. You are always free to ask your doctor about any concerns you have about how your medical information is handled, though the study aims to keep all patient data private and anonymous.

Locations (28)

  • Broom Lane Medical Centre
    Approximate
    Rotherham, England
  • Buchanan Road Surgery
    City only
    Sheffield, England
  • Clifton Medical Centre
    City only
    Rotherham, England
  • Clover City Practice
    City only
    Sheffield, England
  • Clover Group Practice
    City only
    Sheffield, England
  • Highgate Surgery
    Approximate
    Sheffield, England
  • Conisbrough Group Practice
    City only
    Doncaster, England
  • Devonshire Green Medical Centre
    Approximate
    Sheffield, England
  • Dono Valley Healthcare - Sprotbrough Site
    City only
    Doncaster, England
  • The Dove Valley Pms Practice
    City only
    Barnsley, England
  • Dykes Hall Medical Centre
    Unverified
    Sheffield, England
  • Far Lane Medical Centre
    Unverified
    Sheffield, England

Common questions

What is Motor Neurone Disease (MND)?

MND is a serious condition that causes muscles to weaken over time, making it difficult to move, speak, swallow, and breathe. It is currently incurable.

What is the MND Alert tool?

It's a computer program that checks patient electronic records for warning signs of MND and alerts GPs to help them spot the condition earlier.

Who can take part in this study?

This study involves GP practices in South Yorkshire and the GPs who work there, not patients directly.

Will my personal health information be safe?

Yes, GP practices will only share anonymous patient data, meaning individual patients cannot be identified.

When is this study happening?

The study is expected to run from August 2025 to March 2026.

How to find out more

Cara Gates

Always speak to your GP or specialist before deciding to take part in a study.

Discussion

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