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MRC Prion Unit
From fundamental research to prevention and cure

Privacy Policy

General Privacy Notice

UCL (the “University”, “us” or “we”) is committed to preserving your privacy. Please read the following privacy notice to understand how we use and protect the information obtained from those visiting and using UCL’s website www.ucl.ac.uk and its subdomains (the “website”). It applies to personal data provided to us, both by individuals themselves or by third parties and supplements any other UCL privacy notices which may apply, for example the student privacy notice if you apply for a programme of study here. 

UCL's General Privacy Notice can be accessed by clicking here

This privacy policy may change at certain intervals, so please make sure you keep informed of our terms by accessing this page regularly.

Information Usage

The MRC Prion Unit does not collect personal information when you access the web site homepage and browse the web site contents, except in the following circumstances:

  • When you complete an online form and send it back to us

Personal data collected by the MRC Prion Unit will be used and processed in accordance with General Data Protection Regulations which came into effect on the 25th May 2018.


If you send emails to the MRC Prion Unit, you should note that the security of internet email is uncertain. If you send sensitive or confidential email messages, which are not encrypted you accept the risk of possible lack of confidentiality over the Internet.


If you are aged 16 or under, we request that you get your parent/guardian's permission whenever you provide personal details to www.prion.ucl.ac.uk

Privacy Notice for Research Participants

As a university we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information may be limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from a study, we may ask if we can keep the information about you that we have already obtained but it will be up to you to decide. However, it will be difficult to retract data that has been processed and anonymised. To safeguard your rights, we will use the minimum personally-identifiable information possible in our research.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy for Health and Social Care Research.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner's Office (ICO).

Our Data Protection Officer & Freedom of Information Officer is Lee Shailer and you can contact them at l.shailer@ucl.ac.uk. You can also contact the Institute of Prion Diseases with any queries or if you would like further information: GDPR@prion.ucl.ac.uk

Privacy Notice for Business Continuity 

Additional information for individuals involved in the Institute of Prion Diseases' Business Continuity Plan and Recovery Measures can be accessed here

Privacy Notice for Personal Licence Holders

Additional information about the collection and processing of personal data from individuals who wish to undertake regulated procedures at the Institute of Prion Diseases can be accessed here

Links from MRC Prion Unit to other web sites

You may find links to other web sites but the MRC Prion Unit does not control the content of these links and they will not necessarily represent the views or opinions of the MRC Prion Unit.

The MRC Prion Unit cannot accept any responsibility for the content of such links. Please adhere to the privacy policy of the external web site if they have one.

You do not have to ask permission to link directly to pages hosted on this site.