FAQ page about the merge
This page contains more information about why and how we transferred your data and study account from King’s College London to the University of Exeter (April - October 2019).
This information is relevant to all PROTECT study participants who registered on the study prior to January 2019. It gives more detail about the process of moving the PROTECT study management from King’s College London to the University of Exeter, what happened to your data during this process and what your rights are.
What has happened?
Management of the PROTECT study has moved from King’s College London to the University of Exeter. This is because the Chief Investigator (Dr Anne Corbett) and several other researchers on the PROTECT team are now employed by the University of Exeter. The University of Exeter is now the sponsor of the study, meaning it is responsible for the overall management of the study, including safeguarding of participants and ensuring data is stored and used appropriately. King’s College London is now a research site for the PROTECT study, meaning they will continue to support the study alongside the University of Exeter.
In addition, a new website has been created for the PROTECT study which we hope participants will find to be easier and more enjoyable to use. This website went live for existing participants in Autumn 2019, at which point the original website was closed down. Anyone accessing the PROTECT study is redirected to the new website.
What happened to your data?
Your data was transferred to the University of Exeter. The lawful basis for this process under the General Data Protection Regulations (GDPR 2018) is to carry out research as a ‘task in the public interest’.
If you do not want your data to be held at the University of Exeter you can choose to withdraw from the PROTECT study without affecting any healthcare you receive or your legal rights. Your personal data can be destroyed if you wish. Any anonymised data will be retained for research purposes according to the consent you gave when you joined the study.
What will happen to your account?
You will have received an email asking you for consent to move your PROTECT study account to the new website at the University of Exeter. If you chose to give consent then all your data was uploaded to the new website. You will receive an email to let you know when you can log onto the new website and continue your participation in the study.
If you did not give consent for your account to be moved then your data will continue to be held at the University of Exeter, but will not be used to create a new account on the new website. If you attempt to log into the new website we will give you the option of re-activating your account, at which point your data will be reinstated on the new website.
If you choose to withdraw from the study then your account will not be activated on the new website. You can choose to destroy your personal details if you contact us https://www.protectstudy.org.uk/Home/Contact and request to be withdrawn from the study.
Who has approved this process?
This process has been approved by the Research Ethics and Governance Office and Sponsor Representative at the University of Exeter, and Research & Development Offices at King’s College London and South London and Maudsley NHS Foundation Trust, operating under the PROTECT study approvals from the London Bridge NHS Research Ethics Committee and the Health Research Authority. The process is compliant with guidance from the Information Commissioner’s Office and with the GDPR and Data Protection Act 2018 legislation.
How can I find out more?
You can find out more about the lawful basis of data processing through the Information Commissioner’s Office website https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/lawful-basis-for-processing/public-task/
Additional information is available from the Health Research Authority
You can contact the PROTECT study team by using the Contact Us page on this website: Contact
How do I log into my account on the new webpage?
Go to the PROTECT homepage and click “Login” at the top of the page. Enter your email address as your username and the password you used on the original website. You will be asked to reset your password. Follow the instructions to do this and your study account will open.
Why am I being asked to set a new password?
Whilst we have taken every precaution to securely transfer your account data, including encrypting everything while it was in transit, you can simply and effectively increase the level of security around your account by changing your password.
Why can’t I see my study history?
Uploading the information for your account is being done in phases. We are still developing the new website function that will display this information and will release this when it is ready.
What happened to the information about my informant?
Your informant will have been asked to consent and login to the new website. If they have not done these things their information will not be displayed on your account.
Will I still receive a DNA sampling kit?
Yes, we are still sending out DNA sampling kits.
Can I use a different email address for the new website?
You must login the first time with the email address you had registered on the original website at KCL. This will activate your account on the new website and link your data from the old account to the new account. You can then change your email address by selecting Manage My Account on the study dashboard and choosing the option for updating your email address.