Collecting information about people living with MND

The MND Register of England, Wales and Northern Ireland is the first comprehensive source of information collected by healthcare professionals about people with MND.

What is the purpose of the MND Register?

Motor neuron disease (MND) affects about 5,000 people in the UK at any time. We need better information on who is affected and where, as there is no single source of information about who is affected.

In 2015, we received ethical approval for the MND Register (REC ref 15/LO/0810) and set up a national Register for England, Wales and Northern Ireland with the purpose of collecting and storing information about every person with MND in the UK. Counting every person with MND allows us to work out the number of people diagnosed with MND per year, how many people currently have the disease and how this is changing with time. Information such as gender and ethnicity can be used to look for characteristics of people more likely to develop MND.

We will also collect information about where people with MND live to allow for the planning of care for people with MND to take place. It will also tell researchers more about the possible causes of MND. We collect information about the disease itself, for example, where an individual first noticed symptoms, so we can look at how this relates to disease progression.

How we collect data

Data collection occurs during routine clinical appointments, where healthcare professionals extract relevant information from medical records and enter it into the MND Register database. All patients aged 16 or above with a confirmed MND diagnosis residing in England, Wales, or Northern Ireland are eligible for inclusion.

In 2020, we received Regulation 5 support from the Health Research Authority, following advice from the Confidentiality Advisory Group (England and Wales), to allow authorised healthcare professionals to collect patient data without seeking consent from each patient, to help us better understand MND. Under this exemption, your data will be collected at your local MND clinic unless you choose to opt out.

The data we collect is a mix of demographic and clinical information automatically collected by the local care team at your clinic. So there is nothing further you need to do to register for the project. However, if you would like to opt out, please fill in the form here.

However, please take a look at our other research projects (such as Telehealth in MND Research) that you may be able to take part in.

You can also read more about the MND Register and how it works using these resources (Flyer for England and Wales and Flyer for Northern Ireland)

ONGOING COLLABORATIONS

The MND Register for England, Wales and Northern Ireland works with academic, clinical and research partners in the UK and internationally to support high-quality motor neurone disease (MND) research. These collaborations include data-sharing agreements, internal research projects, and data-linkage arrangements that enable approved researchers to use MND Register data or link Register records with other datasets, in line with the appropriate governance, ethical approvals, and data protection requirements.

All collaborations are subject to the relevant review and approval processes, including research ethics, data access, information governance and any other applicable regulatory or institutional approvals, before data are shared or linked.

These collaborations support a wide range of research activities, including epidemiological studies, investigations of disease progression and survival, geospatial and environmental analyses, health services research, and the development of new methods to improve clinical trial design and MND research infrastructure.

The table below summarises current and completed collaborations, their purpose and their current status.

Publications and conference posters arising from this work are available on the MND Register Research Papers page. Information on how to submit a research or data sharing request is available on the MND Register Research Information page.

Partner / Collaboration Agreement Type Title Scope
University of Oxford Data Usage Agreement A preliminary investigation of geographic variation in motor neurone disease diagnosis and outcomes Use of MND Register data to investigate whether geographic and environmental factors influence diagnostic delay, environmental pollution exposure and survival outcomes in people with MND, using geospatial and epidemiological analyses to identify regional variation and potential inequalities in diagnosis and care pathways.
Istituto di Ricerche Farmacologiche Mario Negri (Italy) Data Usage Agreement Investigation of factors influencing MND risk and progression Use of MND Register data for research into factors associated with MND risk, disease progression and survival, including analyses of environmental exposures such as air pollution and the development of predictive models of survival based on clinical and follow-up data.
Queen’s University Belfast Data Usage Agreement Geospatial epidemiology using the MND Register for England, Wales and Northern Ireland Use of MND Register data to investigate potential spatial and environmental determinants of MND through linkage to geospatial environmental datasets, including air pollution, agricultural, climate and area-level contextual exposures, and to support national spatial epidemiological analyses and case–control studies of MND risk.
University of Sunderland Data Usage Agreement Epidemiological analysis of amyotrophic lateral sclerosis in England, Wales and Northern Ireland Use of MND Register data for a student-led epidemiological analysis of ALS across England, Wales and Northern Ireland, examining demographic and clinical patterns to support academic research outputs.
Trinity College Dublin Data Usage Agreement Retrospective study of the natural history and genetic subtypes of ALS using data from TRICALS partners in Ireland, the Netherlands, the UK, Belgium, Sweden and Italy Use of MND Register data within the PRECISION-ALS / TRICALS collaboration to study the natural history of ALS and compare clinical progression, survival, treatment use and key disease milestones across genetic subtypes, including SOD1, C9orf72, FUS and TARDBP, using linked demographic, clinical and genomic data from European population-based datasets.
University of Sussex Data Usage Agreement Is gastrostomy tube placement for people with motor neurone disease affected by where they live and who provides their care? Use of MND Register data to investigate whether gastrostomy tube placement in people with MND varies by geographical location and care pathway, including the timing of gastrostomy relative to diagnosis and death, and whether differences in care provision may affect equity of access to gastrostomy-related care.
King’s College London Internal Data Usage Agreement for Research Project Virtual clinical trial populations in motor neurone disease Use of MND Register data to develop synthetic “digital twin” populations of people with MND for trial modelling and methodological research, with the aim of improving clinical trial design, recruitment planning, inclusion and exclusion criteria, estimation of trial power and duration, and exploration of synthetic placebo comparator data in MND trials.
King’s College London Internal Data Usage Agreement for Research Project ProjectMine predictive model validation Use of MND Register and ProjectMine data to apply and validate a predictive model previously developed for MND, assessing its performance in predicting clinical outcomes within the ProjectMine cohort and supporting methodological work on risk prediction and model validation in MND research.
NHS England Digital Data Linkage Agreement NHS England data linkage to support the MND Register for England, Wales and Northern Ireland Linkage of MND Register records with NHS England routine healthcare datasets, including Hospital Episode Statistics, Emergency Care Data Set and Civil Registration mortality data, to improve case ascertainment, support analyses of disease progression and survival, examine healthcare use and interventions, assess regional variation in care and outcomes, and inform service planning and epidemiological research in MND.
University of Sheffield Collaboration and Linkage Telehealth in MND–Research (TiM-R) linkage with the MND Register Linkage of participant data collected through the TiM-R remote research platform with the MND Register to support inclusion of people with MND who are unable to attend clinics, enhance longitudinal data collection through remote assessments, and generate more comprehensive real-world data to support MND research, disease monitoring and clinical trial design.