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 https://www.kcl.ac.uk/terms/privacy. This privacy notice is in addition to the KCL Core Privacy
Notice and explains how we use your data in this research project.
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
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.
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: https://mndregister.ac.uk/dataset
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:
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.
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:
For more information and definitions, see:
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
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
Further details of who we provide de-identified data to can be found on our webpage
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
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
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.
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: