Privacy and cookies

Privacy Statement

The CARE-MND website is owned and maintained by the University of Edinburgh.

This website contains links to unrelated sites. We are not responsible for the content of these sites and this privacy statement does not apply to them.

What personal data do we collect and why?

1) Personal details that you provide on the Register your interest form

The information you provide will be used to alert the CARE-MND team that you are considering joining the CARE-MND Register of people living with MND in Scotland.

We are using information about you because you have given us your explicit consent to use your data for this purpose, including special category data (health information).

Your personal details will be stored on a secure and password-protected server. We will not share your data with any third party unless when there is a legal obligation to do so.

The CARE-MND team will use the contact details you provided to get in touch and provide you with more details about the Register. When we contact you, you will be given information to help you decide whether to join the CARE-MND Register. This will describe how we will use your personal data for research purposes and will include a new privacy statement.

If you decide not to join the CARE-MND Register, we will delete all the personal data that you provided on the webform.

If you have any questions, please email, or call 0131 465 9517 during normal office hours.

2) Users’ IP address

Your IP address is automatically logged by our web server. IP addresses are used to observe and analyse users’ interest in this website (number of visits, etc). We collect this information on the basis of our legitimate interests and will only use it to improve our website. We will analyse the information using Google Analytics, but will not share it with any other third parties. We will delete it after five years.

3) Cookies

This site uses cookies – small text files that are placed on your machine to help the site provide a better user experience. In general, cookies are used to retain user preferences, store information for things like shopping baskets, and provide anonymised tracking data to third party applications like Google Analytics. As a rule, cookies will make your browsing experience better. However, you may prefer to disable cookies on this site and on others. The most effective way to do this is to disable cookies in your browser. We suggest consulting the Help section of your browser or the About Cookies website which offers guidance for all modern browsers.


If you have any questions, please email or call 0131 465 9517 during normal office hours.

Further information

This privacy statement is continued on the University of Edinburgh website at: