The PROTECT Study

Privacy Policy

Scope and Purpose

The Institute of Psychiatry, Psychology and Neuroscience, King’s College London is committed to safeguarding your personally identifiable information. Whenever you provide such information, we are legally obliged to use your information in line with all laws concerning the protection of personally identifiable information. This means (a) any law, statute, declaration, decree, directive, legislative enactment, order, ordinance, regulation, rule or other binding restriction (as amended, consolidated or re-enacted from time to time) which relates to the protection of individuals with regards to the Processing of Personal Data to which a Party is subject, including the General Data Protection Regulation (GDPR) and Data Protection Act 2018, and any future legislation enacted in the UK in respect of the protection of personal data; and (b) any code of practice or guidance published by the ICO (or equivalent regulatory body) from time to time. These laws are referred to collectively in this Privacy Policy as the "data protection laws"

This online privacy policy describes the practices of The Institute of Psychiatry, Psychology and Neuroscience, King’s College London in regard to information that we obtain via this website. The guidelines at this site are applicable only to this website. It does not describe practices with respect to other sites that we operate, information that we obtain through other means, or the practices of Web sites of third-parties to which we provide links. We do not control and are not responsible for the privacy practices of, or the data available on, the Web sites of third-parties, and we urge you to evaluate the suitability of these practices and data for yourself.

We reserve the right to change this policy at any time without prior notice by publishing changes on this page. Please check this page periodically for updates to this policy. If you have any questions about this policy, or any other aspects of your privacy with respect to the PROTECT Study, please write to us at the following address:

The Co-ordinator
PROTECT Study
Institute of Psychiatry, Psychology and Neuroscience
King's College London
16 De Crespigny Park
London SE5 8AF

Data Protection Laws – Information for Users

For the purposes of data protection laws, the Data Controller in relation to any personally identifiable data you supply on this website is The Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

The Personally Identifiable Information We Collect From You as a Study Participant

For the purposes of the study we collect personally identifiable information including your name, address, email address and gender. We may also collect your genetic data and details of your medical history which are classed as sensitive personal information. All personally identifiable and sensitive personal information will be treated as Confidential. You will be asked to consent to providing this information as part of the registration process. Taking part in the study however is optional, and you can choose to withdraw at any time without giving a reason.

If you have provided personally identifiable information to us about another person (including their sensitive personal details), you confirm that you have their permission to provide that information to us for the same purposes and you have told them who we are and what we will use their data for, as set out in this notice.

The Personally Identifiable Information We Collect On You as a Study Informant

For the purposes of the study we collect limited personally identifiable information on you; this is your full name and email address. We will not collect any information on you that is classed as sensitive personal information. Examples of sensitive personal information are a person’s medical history, ethnic origin or genetic data. All personally identifiable information will be treated as confidential. You do not have to accept your friend or family member’s invitation to become their study informant. If you decide to take part, you can choose to withdraw at any time without giving a reason.

If you have provided personally identifiable information to us about another person (including their sensitive personal details), you confirm that you have their permission to provide that information to us for the same purposes and you have told them who we are and what we will use their data for, as set out in this notice.

How is the Personally Identifiable Information Collected and Stored?

All personally identifiable information is collected via the website using Secure Sockets Layer (SSL) software, which encrypts the information you input. Personally identifiable information and sensitive personal information will be stored securely by South London and Maudsley NHS Foundation Trust (SLaM) and will be managed within the framework of SLaM (and hence NHS) ICT governance procedures. Personally identifiable information and sensitive personal information will be stored in separate databases in encrypted format and in a restricted area requiring authenticated access. Each database has its own separate security policy. All data extracted for statistical analysis is fully anonymised and contains no link to any information that can personally identify you, such as your name, full address, telephone number or email address.

How and Why We Use Your Personally Identifiable Information

All sensitive personal information is used by King’s College London, Institute of Psychiatry, Psychology and Neuroscience for the study of ageing and dementia. Data is statistically analysed as part of a cohort of approximately 25,000 participants. This data does not contain any information that may personally identify you.

Personally identifiable information such as your name and email address will be used to send you reminders and updates, and to enable communication regarding any emerging safety issues or to help answer any questions you have about the study. If you are a study participant we may also use your address to write to you regarding the collection of saliva samples and to inform you of any new research studies you may be interested in taking part in. We will not use your personally identifiable information to contact you about anything not directly related to this study or share your information with any third party without your prior consent.

Should you enrol as a study participant, your name and a record of your consent will be kept as evidence of your agreement to take part in the study.

Who will have Access to Your Personally Identifiable Information?

Only delegated PROTECT study team members will have access to personally identifiable data through the electronic database. This will include the Chief Investigator, study physician, research coordinators and IT specialists.

If you are a study participant, limited personally identifiable information (full name and contact details) will be shared securely with the NIHR BioResource for Mental Health (KCL) for the purposes of collecting a saliva sample from you. This data will be stored securely according to Data Protection Laws and the security procedures in place at the NIHR Mental Health BioResource at King’s College London. The NIHR BioResource for Mental Health may also contact you to inform you of new research volunteer opportunities. It will be up to you to decide whether you would like to participate.

We will not pass any personally identifiable information on to any third party.

Anonymised information such as data from assessments and questionnaires or anonymised genetic data, may be provided to researchers running other studies in King’s College London and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research. This information will not identify you and will not be combined with other information in a way that could identify you. The information will only be used for the purpose of health and care research. It will not be used to make decisions about future services available to you, such as insurance.

How Long Will Your Personally Identifiable Information be Kept?

Your personally identifiable information will be held so long as you are part of the trial. When the trial is completed we will securely store your personal information for a period of 10 years. It will then be destroyed.

If you are a study participant and chose to withdraw from the PROTECT Main study, you will have the option to remove your personal information which includes your address, email, telephone number, NHS number and GP details. To ensure we have evidence of your consent when you participated, we will keep a record of your name, partial postcode (first four alphanumerics) and your consent information.

If you are a study informant and choose to opt out of the study, all personally identifiable information we have collected on you (full name and email address) will be removed from our database. If your friend or family member withdraws from the study or chooses to nominate a different informant, your personally identifiable information will be removed automatically and your time as an informant in the study will end. If you are a participant or an informant for another participant, your personal information will be kept to support these roles.

We will retain all anonymised data collected during the study, including your Study IDs. This data will be kept indefinitely and up until the study objectives have been fulfilled.

If for whatever reason you do not complete the registration process any information we have collected about you will be removed after 30 days. If you choose to decline an invitation to be an informant and you are not a study participant or an informant for someone else all your personal details will be removed. You can also contact the helpdesk at any time to remove your personal details.

What is our ‘legal basis for processing your personal data’?

King’s College London’s lawful basis to process personal data for the purposes of carrying out research is termed as a ‘task in the public interest’. You can provide your consent for the use of your personal data in this study by completing the consent form that has been provided to you.

The University will endeavour to be transparent about its processing of your personal data and this privacy policy, including the study information sheet, should provide a clear explanation of this. If you do have any queries about the University’s processing of your personal data that cannot be resolved by the research team, further information may be obtained from the King’s Information Compliance Team by emailing info-compliance@kcl.ac.uk.

Your Rights

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. Information derived from participant saliva samples will be used for research purposes only and will not be made available to study participants as the medical value of this information is not yet sufficiently understood to give people clear guidance.

You can view or change your personally identifiable information at any time by signing in to your account and selecting ‘Manage Account’.

If you have any questions, comments and requests in relation to how your rights are upheld, please contact the King’s College London Data Protection, at info-compliance@kcl.ac.uk.

Requests from individuals to access their personal information will be managed in accordance with the Information Commissioner's Subject Access Code of Practice. To find out more information on how to make a subject access request please visit the University’s webpage here.

You can complain to the university by contacting the Information Compliance team in relation to how your data was processed. If you are not happy with their response, you can then take the matter to the Information Commissioner's Office.


Cookies Policy

A cookie is a small amount of data, which often includes a unique identifier that is sent to your computer, tablet or mobile phone (referred to here as a "device") browser from a website's computer and is stored on your device's hard drive. Each website can send its own cookie to your browser if your browser's preferences allow it, but (to protect your privacy) your browser only permits a website to access the cookies it has already sent to you, not the cookies sent to you by other web sites.

How Does the PROTECT Study Use Cookies

On the PROTECT Study website, cookies contain a unique identifier which is used to track your user session when logged-on and to ensure that the input data you provide is collected securely and associated with your user account. Other cookies may be used to remember user preferences and to personalise content. No cookies store personal sensitive information or information that can be used to personally identify you.

Third Party Cookies

During your visits to this website you may notice some cookies that are not related to this study. When you visit a page containing embedded content from another site, for example, YouTube, you may be presented with cookies from these web sites. The Institute of Psychiatry, Psychology and Neuroscience, King’s College London does not control the dissemination of these cookies. You should check the third party web sites for more information about these.