Privacy and Data Protection

The UK MND Research Institute is strongly committed to protecting the privacy of users. As you browse our website and whenever you communicate with us, we collect information. It deepens our understanding of what works and what doesn’t, which helps make our communications more effective. The more information we have, the more efficiently we are able to operate. We take protecting your privacy very seriously and will always take all reasonable steps within our power to make sure your information is safe.

Please read this policy carefully, and any other documents referred to in this policy, to understand how we collect, use and store your personal information.

By providing us with your personal information, you consent to the collection and use of any information you provide in accordance with this privacy policy. We may update this policy from time to time without notice to you, so please check it regularly, particularly if you are sending personal information to us. If you have any questions please write to us at ukmndri@kcl.ac.uk.

What information we collect

We collect two kinds of information about our users:

  1. non-personal information – such as IP address (the location of the computer on the internet), pages accessed and files downloaded. This helps us to determine how many individuals use our sites, how many people visit on a regular basis, which pages are most popular, and which pages are least popular. This information doesn’t tell us anything about who you are or where you live, it simply allows us to monitor and improve our service.
  2. personal information – such as name, location, telephone number, and e-mail address. We collect this information only in connection with specific activities, such as applying to participate in a given study. The information is either needed to fulfil your request or to enable us to provide you with a more personalised service. You don’t have to disclose any of this information to browse our sites.

Usage of information

Any personal data relating to you will be used and recorded by us in accordance with current data protection legislation and this Privacy Policy. We will use the information you provide to:

  • record any contact we have with you; and
  • fulfil requests for our services.

Who we share your data with

We may need to share your information with our research providers, study collaborators and associated organisations for these purposes. We do not sell or share personal details to third parties for the purposes of marketing.

In other cases we will not disclose any of your personal data except in accordance with this policy, or when we have your permission, or under special circumstances, such as when we believe in good faith that the law requires it or to protect the rights, property and safety of the UK MND Research Institute, or others. This includes disclosing your details if required to the police, regulatory bodies or legal advisors.

How we keep your data safe

We aim to ensure that there are appropriate physical, technical and managerial controls in place to protect your personal details.

Our website may from time to time contain links to third party websites. If you follow a link to any of these websites, please note that these websites will have their own privacy policies and that we do not accept any responsibility or liability for these policies. Please check these policies before you submit any personal data to these websites.

Despite all of our precautions however, no data transmission over the internet can be guaranteed to be 100% secure. So, whilst we strive to protect your personal information, we cannot guarantee the security of any information which you disclose to us and so wish to draw your attention that you do so at your own risk.

Your consent

By providing us with your personal data, including sensitive personal data, such as on your health, you consent to the collection and use of any information you provide in accordance with the above purposes and this privacy statement.

You also consent to our transferring your information to countries or jurisdictions which do not provide the same level of data protection as the UK, if necessary for the above purposes. If we do make such a transfer, we will, if appropriate, put a contract in place to ensure your information is protected.

Right of access

You have the right to ask for a copy of the information we hold about you (for which we may charge a small fee) and to have any inaccuracies in your information corrected. Ask for a copy of the information we hold about you.

Changes to this policy

We may amend or update this policy at any time to take account of any changes to data protection law or other legislation. When further updates to the policy are made they will be posted on this page, but rest assured we won’t ever make any other changes to the way we use your data without asking you first.

Further information

The laws that dictate how your personal information can be used are: