MND Alert
Research type
Research Study
Full title
Motor Neuron Disease (MND) Alert: a mixed-method feasibility and acceptability pilot study
IRAS ID
351043
Contact name
Chris McDermott
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Motor Neuron Disease (MND) is a rare, incurable condition affecting about 5,000 UK people. It causes muscle weakness over time, making it harder for people to move, speak, and swallow, and eventually leads to difficulty breathing. Because MND is rare, General Practitioners (GPs) may not always recognise it right away, leading to delays in diagnosis. On average, it can take 9 to 27 months from first symptoms to a confirmed diagnosis.
To help GPs identify MND earlier, the MND Association and the Royal College of General Practitioners (RCGP) developed the MND Red Flag Tool in 2014. This tool lists common signs and symptoms that may indicate MND, helping GPs decide when to refer patients to specialists more quickly. The MND Alert system builds on this tool as an automated aid that can be added to patient electronic health records in GP practices. It scans patient records for Red Flag Tool signs linked to MND and sends notifications to GPs when these signs are detected, helping them identify possible cases earlier and make faster referrals. Currently, the MND Alert system can detect symptoms recorded as codes in patient records, but some important information may be written in free-text notes, such as in consultation letters. To ensure nothing is missed, some patient records may need additional manual review.
This study has two stages: (1) implementing the MND Alert system in GP practices for six months and (2) evaluating how well it works and if GPs find it helpful. In stage 1, the MND Alert system will be used in routine GP patient consultations. In stage 2, we will interview GPs from the participating practices to understand their experiences with the tool and assess how effective and practical it is for everyday clinical use.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
24/NE/0231
Date of REC Opinion
19 Dec 2024
REC opinion
Favourable Opinion