Information for patients

The MND Register of England, Wales and Northern Ireland comprises data of all patients with a confirmed MND diagnosis, aged 16 and above, and residing in England, Wales, or Northern Ireland.

Why the MND Register is important

Research shows that the overall number of people diagnosed with MND in the UK is expected to increase significantly from 1,415 cases in 2010 to 1,701 in 2020 and 2,635 in 2116.

Having a national MND Register for patients living in England, Wales and Northern Ireland will enable researchers to count how many people currently have the disease as this remains unknown. It will also help us establish where people with MND live, to help improve care in those areas. Finally, it will enable researchers to collect detailed information to detect changes in rates of MND over time, and identify best practice and improve patient care and outcomes.

Patient FAQs

Data collection occurs during routine clinical appointments, where healthcare professionals extract relevant information from medical records and enter it into the MND Register database. All patients with a confirmed MND diagnosis, aged 16 and above, and residing in England, Wales, or Northern Ireland are eligible for inclusion. The data we collect is a mix of demographic and clinical data that is collected by the local care team in your clinic. So there is nothing further you need to do to register for the project. 

Your personal information, including your name, gender, date of birth, diagnosis, postcode, care, and treatments you receive, is collected from your medical records by a trained healthcare professional at your local MND clinic.

If you have participated in the KCL Biobank or ALS Biomarkers studies, we may link some of your data with the MND Register dataset. This helps researchers understand the proportion of people participating in research and allows results from MND studies to be generalized to the wider population.

If you have not participated in either of these studies, no data linkage will take place.

A full list of the data we collect can be found here.

A trained healthcare professional at your local MND clinic transfers your data via secure coded NHS email to the MND Register team. Your data is then stored on a secure platform at King’s College London accessed by two members of the MND Register team for data cleaning, analysis and is used for research purposes.

Some of your identifiable data (name, DOB, NHS number, gender and postcode) in the MND Register database are used to link to other healthcare information held by NHS Digital, NHS Wales Informatics Service and the Office for National Statistics. This enables us to look at care and access to services patients receive across England and Wales.

We may also receive requests from other MND researchers who wish to obtain a copy of your de-identified data (data that does not identify who you are) to learn more about MND. This will include researchers outside the UK who would receive your data in an anonymised format and would be unable to identify you.

Your data is stored in a database on a secure server at King’s College London accessible only by authorised individuals. Data are uploaded and downloaded from NHS digital, NHS Wales Informatics Service and the Northern Ireland Care Network using secure web portals. For more information, please visit our privacy notice for people with MND.

In 2020 we received Regulation 5 support from the Health Research Authority following advice by the Confidentiality Advisory Group (England and Wales) to allow authorised healthcare professionals to collect patient data without seeking consent from each patient to help us understand more about MND. Under this exemption, patient data will be collected at a local MND clinic unless the patient chooses to opt out.

If you do not wish for your data to be included in the MND Register you can opt-out. If you opt-out of us collecting your data this opt-out will remain in place unless you change your mind.

If you wish to be excluded from the MND Register please contact the MND Register team by email mndregister@kcl.ac.uk / elizabeth.gray@ndcn.ox.ac.uk

Opting out does not impact your treatment or the standard of care you receive.

MND Register Opt-out Form

If you do opt-out that any data we have already collected and included in an existing dataset cannot be removed or erased. This includes anonymised data provided to researchers.

De-identified clinical information as required for national audit will still be submitted and remain part of the audit database but the MND Register will not be able to identify you, link your records or use your records in any research.

We hope that the results of this study will be suitable for scientific publication in biomedical journals, and for communication to patients via the Motor Neurone Disease Association. You will not be personally identified in any way.

Patient dataset

Privacy policy: Patients