MND Register for England, Wales and Northern Ireland
Research type
Research Database
IRAS ID
357975
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
25/LO/0371
Date of REC Opinion
20 Jun 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This study involves the collection of data from patients diagnosed with Motor Neuron Disease (MND) who are over 16 years old and reside in England, Wales, or Northern Ireland. Data will be gathered during routine clinic appointments by healthcare professionals, who will extract relevant information from patient medical records. The collected data will be stored securely in the MND Register database at King’s College London (KCL). Data will be submitted through secure NHS.net email and will be cleaned and analyzed by data scientists and will be used for research publications and conference presentations.
The data collected includes demographic details and, clinical variables. Patients are approached during their routine clinic appointment and information regarding the MND Register will be provided via notification flyer. For patients unable to attend appointments, information about the study and how to opt-out will be provided through flyers and web page. Data security is a priority, with strict access controls in place to ensure confidentiality. Participants can choose to opt out of data inclusion at any time, with no impact on their care. Data is stored safely and is only used for research purposes.
Research programme
The MND Register is the first comprehensive source of information collected by healthcare professionals about people living with MND in England, Wales and Northern Ireland. The MND Register aims to collect information about people with MND, to understand more about why certain people are vulnerable to the disease.
Research database title
MND Register for England, Wales and Northern Ireland
Establishment organisation
King's College London
Establishment organisation address
Room 8.11, 8th Floor Melbourne House, 44-46 Aldwych
London
WC2B 4LL