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
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.
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
Personal contact details such as name, title, work address, institution name, telephone numbers, and email addresses.
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.
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.
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.
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 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 firstname.lastname@example.org.
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
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.
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: