MND Register

MND Register for England, Wales and Northern Ireland

The MND Register will collect information about every person living with motor neuron disease (MND).

Find out more on the MND Register website

UK Chief Investigator

Professor Ammar Al-Chalabi

Research summary

MND affects about 5,000 people in the UK at any one time, but the true figure is not known as there is no single source of information about who is affected. The purpose of the study is to collect and store 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 collect information about where people with MND live to allow for planning the care of people with MND to take place. It will also tell researchers more about the possible causes of MND. We also collect information about the disease itself, for example, where patients first noticed symptoms, so we can look at how this relates to disease progression.

Current status

Active – Recruiting

Key dates

Study start date: 1 April 2016

Planned recruitment end date: 25 November 2025

Recruitment group(s)

Patients with MND

Recruitment targets

950 patients

Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search) 

Locations

• London (King's College Hospital)

• Oxford

• Sheffield

• Liverpool (The Walton Centre)

• Newcastle

• The James Cook University Hospital, Middlesbrough

• Preston

• Salford

• Nottingham

• Norfolk and Norwich

• Cambridge

• Leicester

• Derby

• Bristol

• Birmingham

• Gloucestershire Hospitals NHS Foundation Trust

• The Royal London Hospital

• London (St George's Hospital, Tooting)

• Dartford

• Phyllis Tuckwell Hospice, Farnham

• University Hospitals Dorset NHS Foundation Trust

• Plymouth

• Kent and Canterbury Hospital

• Brighton

• Southampton

• Stoke

• Slough

• Royal Free Hospital, London

• St Barnabas House Hospice West Sussex

• Aneurin Bevan University Health

• Sue Ryder Wheatfields Hospice

• Royal Victoria Hospital, Belfast

• University College London Hospitals

• Harrogate and District NHS Foundation Trust

• St Catherine's Hospice Crawley

• Somerset Partnership Community Care

• Royal Berkshire Hospital NHS Foundation Trust

• Shrewsbury and Telford Hospital NHS Trust

• Royal Devon and Exeter Hospital (Wonford)

• West Suffolk NHS Foundation Trust

• Hywel Dda University Local Health Board

• Cwm Taf Morgannwg University Health Board

• Swansea Bay University Local Health Board

• Cardiff and Vale University Local Health Board

• Basildon Hospital

• University Hospitals Coventry and Warwickshire NHS Trust

• Cynthia Spencer Hospice Northampton

• Sussex Community NHS Foundation Trust 

Information about study sites

Contact details

Andrea Bredin and Emma Harper

Email: mndregister@kcl.ac.uk

Phone: +44 207 018 6522 / 7714

Inclusion / exclusion criteria

Inclusion criteria

• The participants will have MND, diagnosed by a consultant with expertise in neurological disease.

• Live in England, Wales or Northern Ireland.

• Over the age of 16 years old.

Exclusion criteria

• Participants who do not have a diagnosis of MND as confirmed by a consultant neurologist.

• Children under the age of 16 years old.

• Not a resident in England, Wales or Northern Ireland.

Sponsor

King's College London

Study design

Research database

Outcome measures

The information collected in this project is intended as a resource for researchers.

We will be able to share anonymised datasets with researchers. We can only share data if the proposed use of the data is discussed and agreed by the data access committee and there is a data-sharing agreement in place.

Participant information sheets

MND Register notification flyer for England and Wales (PDF, 242KB)

MND Register notification flyer for Northern Ireland (PDF, 241KB)