You can find out more about the MND Register via the study’s website: https://mndregister.ac.uk/
|Study title||MND Register for England, Wales and Northern Ireland|
|UK Chief Investigator||Professor Ammar Al-Chalabi|
|Research summary||Motor neuron disease (MND) affects about 5000 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 also 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 collect information about the disease itself, for example, where patients first noticed symptoms, so we can look at how this relates to disease progression.|
|Inclusion/exclusion criteria||Inclusion Criteria:
• The participants will have motor neuron disease, diagnosed by a consultant with expertise in neurological disease.
• Live in England, Wales or Northern Ireland.
• Over the age of 16 years old.
• Do not have a diagnosis of MND as confirmed by a consultant neurologist.
• Children under the age of 16 years old.
• Not resident in England, Wales or Northern Ireland
|Current status||Active – recruiting|
|Locations||London (King's College Hospital)
Liverpool (The Walton Centre)
The James Cook University Hospital
Nofolk & Norwich
Gloucestershire Hospitals NHS Foundation Trust
The Royal London Hospital
London (St George's Hospital, Tooting)
Phyllis Tuckwell Hospice, Farnham
University Hospitals Dorset NHS Foundation Trust
Kent and Canterbury Hospital
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
University Hospitals Coventry and Warwickshire NHS Trust
Cynthia Spencer Hospice Northampton
|Contact details||Andrea Bredin and Emma Harper
Phone: 0207 01865 22 7714
|Recruitment group(s)||Patients with MND|
|Recruitment target(s)||950 patients.|
|Key dates||Study start date: 01 April 2016
Planned recruitment end date: 25 November 2025
|Sponsor||King's College London|
|Study design||Research Databaase|
|Intervention (if applicable)||N/A|
|Phase (if applicable)||N/A|
|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.
|Publications / Results reports||Links to publications will be made available here.|
|Participant Information Sheet||MND Register Notification Flyer for England and Wales
MND Register Notification Flyer for Northern Ireland