Welcome to the Lynch syndrome registry pilot study website!

Data confidentiality, privacy notice and transparency statement

How will we use information about you?

Imperial College London is the sponsor for this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. Imperial College London will keep your personal data for:

• 10 years after the study has finished in relation to data subject consent forms.

• 10 years after the study has completed in relation to primary research data.

We will need to use information from your medical records for this research project. This information will include your name, NHS number, date of birth and contact details. People will use this information to do the research or to check your records to make sure that the research is being done properly.

Your name and contact details will only be seen by members of the research team who need this information for the purposes of the research. We will use patient identifiable information only when strictly necessary. In all other cases, we will use your information in pseudonymised form; this involves removing any details that can identify you and swapping these ‘identifiers’ for a code number. We will keep all information about you safe and secure.

Once we have finished the study, we will keep some of the data so we can check the results. It will not be possible to identify who has taken part in the study from the results we will present in reports and publications.

Legal basis

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.

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 Framework for Health and Social Care Research.

International transfers

If you have given specific consent for this then there may be a requirement to transfer information to countries outside the European Economic Area (for example, to a research partner). Where this information contains your personal data, Imperial College London will ensure that it is transferred in accordance with data protection legislation. If the data is transferred to a country which is not subject to a European Commission (EC) adequacy decision in respect of its data protection standards, Imperial College London will enter into a data sharing agreement with the recipient organisation that incorporates EC approved standard contractual clauses that safeguard how your personal data is processed.

Sharing your information with others

For the purposes referred to in this privacy notice and relying on the bases for processing as set out above, we will share your personal data with certain third parties.

  • Other College employees, agents, contractors and service providers (for example, suppliers of printing and mailing services, email communication services or web services, or suppliers who help us carry out any of the activities described above). Our third party service providers are required to enter into data processing agreements with us. We only permit them to process your personal data for specified purposes and in accordance with our policies.
  • Research Collaborators / Partners in the study: NHS Digital

NHS Digital is an executive non-departmental public body, sponsored by the Department of Health and Social Care, which uses information and technology to improve health and care. We will work with NHS Digital to help collect and verify your health status and information at one year following recruitment, for example, if you are diagnosed with a condition related to Lynch syndrome, such as cancer. In order to do this, we will need to use your date of birth and NHS number, which are already held by NHS Digital, to help identify your information. These details will be treated in confidence and in accordance with the Data Protection legislation. NHS Digital will securely transfer this information to us and we will upload it to the registry.

What are your choices about how your information is used

You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have.

  • We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.
  • If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study.

If you think that we might be processing your data and you wish to exercise any of the rights listed above, please get in touch using the details on the ‘Contact Us’ page on this website or by contacting the Imperial College London Data Protection Officer via email at dpo@imperial.ac.uk . Though it may not always be possible for us to fulfil your request, we will respond to your query within one month. For more information on your GDPR rights, please see guidance provided by the Information Commissioners Office.

Where can you find out more about how your information is used?

You can find out more about how we use your information:


If you wish to raise a complaint on how we have handled your personal information, please contact Imperial College London’s Data Protection officer via email at dpo@imperial.ac.uk, via telephone on 020 7594 3502 or via post at Imperial College London, Data Protection Officer, Faculty Building Level 4, London, SW7 2AZ.

If you have any other form of complaint, please contact Imperial College London’s Research Governance and Integrity Team directly via email at rgit.ctimp.team@imperial.ac.uk or via telephone on 020 7594 1862.

If you are not satisfied with our response or believe we are processing your personal information in a way that is not lawful you can complain to the Information Commissioners Office (ICO). The ICO does recommend that you seek to resolve matters with the data controller (us) first before involving the regulator.