MND Register Privacy Notice - for people with MND

Who is this document for?

People with a diagnosis of motor neuron disease who are resident in England, Wales and Northern Ireland. If you have been diagnosed with MND you will be included in the MND Register for England, Wales and Northern Ireland, unless you choose to opt-out.

This privacy notice tells you what to expect when the MND Register collects personal information, the way we handle, process and store your information, and how we will communicate with you.

The KCL Core Privacy Notice information can be found at This privacy notice is in addition to the KCL Core Privacy Notice and explains how we use your data in this research project.

Why are we collecting your data?

The MND Register for England, Wales and Northern Ireland (“MND Register”) is a project that collects and stores information about every person with Motor Neuron Disease (MND) in England, Wales and Northern Ireland. Data is collected at one single time point (cross- sectional data) and over multiple time points (longitudinal data).

Collecting data will enable us to perform


Counting every person with MND allows us to work out the number of people diagnosed with MND per year, how many people currently have the disease and how this is changing with time. Any data collected and available to researchers outside the MND Register team will be in a de-identified format (ensuring your identity is not revealed) and will help researchers answer questions and learn more about the possible causes of MND.


Collecting clinical data from people with MND allows us to find out if healthcare is being delivered in line with standards. This will help improve the quality of the care and treatment people receive.

About the MND Register

The MND Register is funded by the MND Association and led by the Chief investigators Professor Ammar Al-Chalabi at King's College London (KCL) and Professor Kevin Talbot at the University of Oxford. Patient clinical information is collected at participating hospitals and neurology services and is then stored at King’s College London. King’s College London has overall responsibility (is the data controller) for the data collected as part of this project.

At the time of writing this document we have an agreement in place with each participating centre (hospital/hospice/neurology service) who is acting as a data collector for the project.

What data are collected as part of the MND Register and how?

The MND Register stores and uses personal data (any information which relates to or may identify an individual) in order to perform research and audit. ‘Personal data’ is information relating to a living, identifiable individual. It can also include "special category data”, under GDPR legislation, which is information about your racial or ethnic origin, genetics and physical or mental health, the processing of which is subject to stricter requirements.

We will collect your personal data from a variety of sources including healthcare professionals who provide your care or treatment, central hospital statistics from NHS Digital, NHS Wales Informatics Service, and the Northern Ireland Care Network, along with mortality information from the Office of National Statistics. For more information on what data we collect please refer to:

Where we have approval from the Health Research Authority the MND Register will provide your personal details (date of birth, NHS number, name, gender and postcode) to the above- mentioned organisations in order to link your medical records and take a copy of parts of your official hospital records. We call this way of collecting information “data linkage”. These personal identifiers are not made available to anyone else outside of the King’s College London MND Register team. All MND Register employees who work with the data have responsibility for ensuring data is collected, stored and handled appropriately. Each MND Register staff member handling personal data must ensure that it is handled and processed in line with the King’s College London and the MND Register Data Protection Policy which can be found here:

How is my data stored?

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.

What is the legal basis for collecting and processing the information?

The research work of the MND Register has approval from the Secretary of State for Health and Social Care under section 251 of the NHS Act 2006 via the Health Research Authority’s Confidentiality Advisory Group (you can find more information about them here: ) which sets aside the common law duty of confidentiality. This means the MND Register can use patient identifiable data for research and audit without individual patient consent in circumstances when it is not possible to use anonymised information and when seeking individual consent is not practical.

Our legal basis for using your information, under GDPR and the Data Protection Act 2018 is:

  1. performance of a task carried out in the public interest (Article 6(1)(e) in the GDPR); and, where special categories of data are involved
  2. scientific or historical research purposes or statistical purposes (Article 9(2)(j) in accordance with Article 89(1)).

For more information and definitions, see:

Who do we share your de-identified data with and why?

We only share de-identified data (where personal identifiable data has been removed) with researchers and third parties unless we are under a duty to disclose or share identifiable data to comply with any legal obligation, or to enforce or apply our terms of use and other agreements.

In sharing your de-identified data with researchers or third parties we are increasing our understanding and knowledge of Motor Neurone Disease which will lead to better care and treatments. Your de-identified data will also be disseminated through scientific publication, conference presentation and service user / carer groups. We follow guidelines ( ) to ensure that the data we collect are as accurate as possible and to remove the risk that any individual may be publicly identified from the data before sharing any data with other researchers or third parties.

Further details of who we provide de-identified data to can be found on our webpage

What are your rights?

By law, you have certain rights over your personal information; these include:

It is important to understand that the extent to which these rights apply will vary and that in some circumstances a right may be limited. It should also be noted that we can only implement your rights during the period upon which we hold personal identifiable information about you.

It will not be possible to remove data already included in a research dataset or to destroy data that have been distributed to other researchers or third parties with whom we collaborate. Pre-existing data and data already distributed to other researchers cannot be destroyed. To make a request to us for any personal information we may hold on you, please refer to, which provides further details on requests for personal information.

How long do we keep your information for?

The data we collect will be kept for a minimum of 5 years after an individual has died; after this period, we will review the current dataset and confirm if we still require the data as part of the overall dataset. If the data is no longer required, we will destroy this data in line with King’s College London IT policy.

How to complain

The MND Register aims to meet the highest standards when collecting and using personal information. We encourage people to tell us if they think that our collection or use of information is unfair, misleading or inappropriate. We would also welcome any suggestions for improving the way we handle your personal details. Please get in touch with us:

If you would like to complain about our handling of your data, contact the University’s Data Protection Officer by: