What is the MND Register?
The MND Register is a major five year project that aims to collect and store information about every person living with MND in England, Wales and Northern Ireland. It is led by world-class MND researchers Prof Ammar Al-Chalabi and Prof Kevin Talbot, at a cost of £400,500 (our grant reference: 926-794).
Why is it important?
MND is believed to affect 5,000 people in the UK at any one time, however the true figure is not known as there is currently no way of recording this information. The register aims to provide us with the true number of people living with MND in the UK.
The information collected will answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people. The register will connect people with MND to researchers, including those conducting clinical trials, and will provide valuable information to guide the future development of care services.
How will information be collected and used?
The register will be advertised nationally to all people with MND and related healthcare professionals. People with MND will be provided with detailed information about the register, and after some time for consideration, they can agree to take part. Their information will be recorded onto a secure database, either by a healthcare professional, or by the person with MND themselves through a register website (this will then be checked by a healthcare professional).
Information collected will be used to answer questions about the disease and about care provision in different areas. Researchers will be able to apply to use the data (which will always be kept anonymous) for future research. We hope that the register will be an invaluable resource for the MND research community for many years.
The pilot phase of the study has started. The researchers are using this phase to test out their project plan in the South East of England, where collection of information about MND patients has been happening locally for many years. This will allow them to optimise the way that they capture information. Once this is complete the MND Register will start to collect data in increasingly larger areas until the whole of England, Wales and Northern Ireland are covered.
For more information on the register please visit our website.
We are grateful for the support of the Betty Messenger Charitable Foundation in funding this project.
Throughout June 2016 MND Awareness Month will be highlighting the rapid progression of the disease in its powerful Shortened Stories campaign, sharing the experiences of people currently living with MND, or who have lost loved ones to the disease, through art, poetry and film.