The Motor Neuron Disease Register for England, Wales, and Northern Ireland: Protocol for a Population Register

Journal article

BackgroundDespite the existence of several regional registries in the United Kingdom, gaps in geographic coverage have limited the ability to produce accurate national estimates of incidence, prevalence, and regional variation for motor neuron disease (MND). To address these challenges, a comprehensive national register encompassing England, Wales, and Northern Ireland was established to support epidemiological studies, health care planning, and clinical research.ObjectiveThe primary objective of the MND Register is to provide a centralized research database aggregating clinical and demographic data to facilitate high-quality research. Secondary objectives include estimating disease incidence and prevalence, identifying regional differences in care and survival, evaluating potential disease clustering, and supporting data linkage and clinical trial recruitment.MethodsEligible patients are those aged 16 years or older with a confirmed MND diagnosis made by a consultant neurologist. Data are collected prospectively and retrospectively through standardized templates, available via Microsoft Access, Microsoft Excel, or the REDCap (Research Electronic Data Capture; Vanderbilt University) web platform, and include up to 34 demographic and clinical variables. Additional self-reported data can be contributed through the Telehealth in MND-Research platform. All data are securely stored in the King's College London Trusted Research Environment, undergo standardized preprocessing, and may be linked to National Health Service and national datasets for epidemiological analyses.ResultsThe register includes data on over 11,000 individuals with MND, of whom nearly 7000 are currently alive. Postcode data are available for more than 4300 patients, enabling future geospatial analyses. By October 2025, 60 clinical sites were participating in the register, with around 50 actively submitting data.ConclusionsThe MND Register represents one of the largest national registries for MND worldwide, providing a robust foundation for epidemiological modeling, clinical research, and health care planning. Ongoing efforts to expand prospective data collection, improve completeness, and integrate digital tools will further enhance its impact and support national and international MND research collaborations.

Authors: Biondi, A; Gray, E; Aggreh, M; Jones, E; Collingwood, A

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: JMIR Publications
• Journal: JMIR Research Protocols
• Volume: 15
• Pages: e86458
• Article number: v15i5e86458
• Publication date: 2026-06-03
• Acceptance date: 2026-04-14
• DOI: 10.2196/86458
• EISSN: 1929-0748
• ISSN: 1929-0748
• Pmid: 42237817
• Language: English
• Keywords: Protocol; Motor Neuron Disease; Northern Ireland; Prevalence; Incidence; Wales; England; Amyotrophic Lateral Sclerosis; Registries; Methodology; motor neuron disease; Female; Humans; National Register