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MND Register for England, Wales and Northern Ireland

  • Research type

    Research Database

  • IRAS ID

    173389

  • Contact name

    Ammar/A Al-Chalabi

  • Contact email

    ammar.al-chalabi@kcl.ac.uk

  • 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