E-Cigarette Registry | FAQ - E-Cigarette Registry

FREQUENTLY ASKED QUESTIONS

WHAT WAS THE E-CIGARETTE REGISTRY?

The E-Cigarette Registry was a database of health data collected from people who had quit smoking both with and without switching to vaping. With lots of people, over a long time, we hoped to get a broad picture of the health effects of vaping, on its own and vs smoking.
The purpose of the database was to help researchers answer their questions about e-cigarettes.

HOW WILL PARTICIPANT DATA BE KEPT SAFE?

Personal details like names were only to be used so that we could access your health data. For example, if we wanted to know if participant John Smith went to A&E last year, we would need to tell NHS Digital that John Smith would like to share that information with us.

Health data will be kept separately from details that can identify participants (this is called 'pseudonymisation'), then this pseudonymised data will be held securely by us with all of the other participants' health data.

If a researcher would like to use it, they have to apply to a Data Access Committee who protect your data and your rights under UK GDPR. If the Data Access Committee agree that the researchers have adequate security for your data, and their question is scientifically sound, they will give some data to those researchers under a Data Sharing Agreement, which further protects your data while it is with them by mandating storage and access conditions. Any data the researchers receive will always be completely anonymous, meaning that it can never be linked back to you.

WHO WAS DOING THIS RESEARCH, AND WHY?

Cancer Research UK & King's College London Cancer Prevention Trials Unit, Queen Mary University London. It was funded by Cancer Research UK to address the evidence gap in the long-term health effects of vaping.

HOW DO I JOIN?

We are no longer recruiting participants for this project, but thank you for your interest.

WHAT IF I JOINED AND THERE IS A PROBLEM?

If you have any questions, concerns or complaints about any part of this study, or you’d just like to know more, please get in touch: cptu@kcl.ac.uk.

STOPPING

The Registry has now closed and there will no more data collection. This means that if you are a participant, you will no longer receive any contact from us, and your healthcare will be unaffected. We will keep information about you that we already have. Your data will be stored for 5 years after the end of the Registry. For more information or to stop being involved, get in touch: cptu@kcl.ac.uk.

Still have questions? Get in touch on cptu@kcl.ac.uk