MND Register for England, Wales and Northern Ireland
Research type
Research Database
IRAS ID
173389
Contact name
Ammar Al-Chalabi
Contact email
Research summary
MND Population Register for England, Wales and Northern Ireland
REC name
London - South East Research Ethics Committee
REC reference
15/LO/0810
Date of REC Opinion
27 May 2015
REC opinion
Favourable Opinion
Data collection arrangements
The MND Population Register for England, Wales and Northern Ireland aims to collect information about every person with MND in the UK. Recording 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 motor neuron disease. 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, because environmental factors such as pollution levels in different parts of the country. We collect information about the disease itself, for example, where you first noticed symptoms, so we can look at how this relates to disease progression.
We will achieve this by working with services that treat people with MND across England, Wales and Northern Ireland to collect the data. We will also develop a website where patients can enter their own data directly.Research programme
The MND Population Register for England, Wales and Northern Ireland will support the MND research community by providing a comprehensive, prospective database with every MND patient included. Combined with the Scottish MND register, this will give an accurate picture of the numbers of people with MND in the UK. We are collecting a standardised European dataset which means the data can be readily incorporated. This means it will also be possible to integrate the database into larger datasets of European-wide data and directly support other pan-European projects such as SOPHIA, STRENGTH, ALS-CarE, NEEDS in ALS, ONWebDUALS and NETCALS, NISALS, TRICALS and Project MinE. The register is set up to answer specific research hypotheses about incidence, prevalence,and environmental factors associated with, MND in the UK and will be set up to enable research on epidemiological and translational science.
Research database title
MND Population Register for England, Wales and Northern Ireland
Establishment organisation
King's College London
Establishment organisation address
Institute of Psychiatry
Denmark Hill Campus
London
SE5 8AF