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 can sign up and enter their information. We will ask your clinical team to confirm your diagnosis once your basic information has been entered.
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.
If you have access to the internet you can take part via the website at www.MNDRegister.ac.uk to upload and view your information at any time. The website includes more detailed information and explains how to give your consent to take part. If you would like assistance there are help notes and FAQs available on the website and you can contact the register project managers: Lynn Ossher (firstname.lastname@example.org) and Martina de-Majo (email@example.com).
The register stores information such as name, date of birth, NHS number and gender. Information is stored securely according to NHS standards so that personal details cannot be directly linked to the diagnosis of MND except by the register team.
The register is funded by the MND Association and is being coordinated at Kings 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 or telephone: Lynn Ossher (firstname.lastname@example.org; 01865 234957) or Anna Kulka (email@example.com; 020 7848 5244).
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