MND Register Privacy Notice - for researchers

Who is this document for?

Researchers completing an online proposal or data sharing agreement for access to datasets collected as part of the MND Register for England, Wales and Northern Ireland (the “MND Register”).

The KCL Core Privacy Notice information can be found here: This privacy notice is in addition to the KCL Core Privacy Notice and explains how we use your data in this research project and details the way we handle, process and store your information and communicate with you.

Why are we processing your personal information?

We, the MND Register team, will use and process your information, so we can communicate with you about your proposal. We may also collect your personal details on supporting documents related to your proposal. These may include data access agreements, data sharing agreements, confidentiality agreements or data user responsibilities agreements. We may also collect your personal details when you submit a manuscript for review.


All individuals on the Data Access committee have a responsibility for ensuring data is stored and handled appropriately. Each individual handling personal data must ensure that it is handled and processed in line with Data Access Committee Terms of Reference which can be accessed here

What personal data from researchers is collected?

Personal contact details such as name, title, work address, institution name, telephone numbers, and email addresses.

How is my information stored?

Your data is stored on an internal secure folder on the King’s College London network, that is accessed by the authorised individuals on the MND Register team.

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

Our legal basis for using your information, under GDPR and the Data Protection Act 2018, is that it is in our (or another organisation’s) legitimate interests, and that interest is not overridden by your interests and rights.

Who do we share your information with and why?

Your data is shared with the London - South East Research Ethics Committee (REC) as part of our favourable approval. We provide the REC with details of what data we have shared with other researchers and for what purposes. We also share your information with the Motor Neurone Disease Association (MNDA), the main funder for the project. We share this information to inform our funder of our data-sharing activity.

We will not use your information for any other purpose, and we will never sell your personal information to other organisations.

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 our records or to destroy data that have been distributed to others including our funders and the Research Ethics Committee.

For more information about this document please contact us at

The accuracy of your information is important to us. Please let us know if any of your details change or you move institutions.

To make a request to us for any personal information we may hold on you, please contact us. If we do hold information about you, we will give you a description of it; tell you why we are holding it; tell you who it could be disclosed to; and let you have a copy of the information.

How long do we keep your information for?

We will keep your information for one year before the personal data will be destroyed in order to fulfil our duty in informing our funder the Motor Neurone Disease Association (MNDA) and the South East Research Ethics committee (REC) about our data sharing activity in annual reports.

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: