What is the MND Register?
A population register is a collection of information about every person in an area with a particular condition. This population register aims to collect information about every person with Motor Neuron Disease (MND) in England, Wales and Northern Ireland.
There is currently no nationwide register that records clinical information about people with MND, and the true number of people with MND is not known. The information collected can be used to learn how a person is affected by MND, how the condition progresses and how many people have MND in different areas. This will allow research into the causes and characteristics of MND and help inform care planning. MND is rare, so it is important to collect information in as complete a way as possible.
Anyone in England, Wales and Northern Ireland with a confirmed diagnosis of MND.
Registries like this help specialists gain knowledge about MND and how the condition progresses - information that is vital for planning appropriate medical care. The register will not directly benefit you but will provide benefit for people with MND in the future.
When you attend your routine clinic appointment where you see your consultant neurologist your data will be collected as part of your appointment. If you have any questions about the MND Register you can contact the project managers on email@example.com.
The register stores information such as name, date of birth, postcode, NHS number and gender. Information is stored securely according to the General Data Protection Regulation (GDPR) and the Data Protection act 2018.
Your data are collected by a trained healthcare professional at your local MND clinic and transferred via secure coded NHS email to the MND Register team. Your data are then stored on a secure platform at Kings College London, accessed by trained members of the MND Register team for research purposes.
The MND Register is funded by the MND Association with the Betty Messenger Charitable Foundation and an anonymous family trust; it is being coordinated by King's College London and the University of Oxford.
Detailed information about the register can be found on the website: www.mndregister.ac.uk. If you have any questions that are not answered by the information online, please contact either project manager for the project by email: firstname.lastname@example.org.