(duplicate) MND Register for England, Wales and Northern Ireland
Research type
Research Database
IRAS ID
282429
Contact name
Ammar Al-Chalabi
Contact email
Research summary
MND Register for England, Wales and Northern Ireland
REC name
London - South East Research Ethics Committee
REC reference
20/LO/1189
Date of REC Opinion
25 Nov 2020
REC opinion
Favourable Opinion
Data collection arrangements
The MND Register for England, Wales and Northern Ireland aims to collect information about every person with MND in these regions. 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. We will also collect information about where people with MND live and link this with Hospital Episode Statistics (HES), and Office of National Statistics (ONS). This will help answer questions around health care provision and survival analysis in different regions of the UK.
The project will have numerous data collection centres including specialist MND Care centres, general neurology clinics, palliative and community services. Each centre will collect identifiable patient data during the patient’s routine appointment. These data will be stored locally and transferred securely to the central database twice a year.
Patients will have access to notification flyers which explain more about the project including what data is collected, how this data is used, how to find out more information and how to opt-out if they wish to no longer have their data collected as part of the MND Register.Research programme
The MND Register for England, Wales and Northern Ireland will support the MND research community by providing a comprehensive 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. 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 Epidemiological research. Linking the data to Hospital Episode Statistics (HES), and Office of National Statistics (ONS) will enable us to look at differences in care across the three regions and mortality data. The MND Register will also allow the release of de-identified data to MND researchers and collaborators to further increase knowledge and understanding of Motor Neurone Disease. Prior to the release of data, researchers must submit applications to the Data Access Committee and demonstrate that their research is of scientific merit and will benefit patients with MND.
Research database title
MND Register for England, Wales and Northern Ireland
Establishment organisation
King's College London
Establishment organisation address
Department of Basic and Clinical Neuroscience
5 Cutcombe Road
London
SE5 9RX