JMIR Publications

ABSTRACT

Background:

Despite several regional registries existing in the UK, 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, healthcare planning, and clinical research.

Objective:

The primary objective of the MND Register is to provide a centralized research database aggregating clinical and demographic data from across the UK 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.

Methods:

Eligible patients are those aged ≥16 years with a confirmed MND diagnosis made by a consultant neurologist. Data are collected prospectively and retrospectively through standardized templates, available via MS Access, Excel, or the REDCap web platform, and include up to 34 demographic and clinical variables. Additional self-reported data can be contributed through the Telehealth in MND–Research (TiM-R) platform. All data are securely stored in the King’s College London Trusted Research Environment, undergo standardized preprocessing, and may be linked to NHS and national datasets for epidemiological analyses.

Results:

The Register includes data on over 11,000 individuals with MND, of whom nearly 7,000 are currently alive. Postcode data are available for more than 4,300 patients, enabling future geospatial analyses. By October 2025, 60 clinical sites were participating in the Register, with around 50 actively submitting data.

Conclusions:

The MND Register represents one of the largest national registries for MND worldwide, providing a robust foundation for epidemiological modelling, clinical research, and healthcare 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. Clinical Trial: This is not a Clinical Trial but a Research Register. The MND Register has undergone ethical review by the London - South East Research Ethics Committee (REC reference: 25/LO/0371) and has been in operation since 2015.