Participants’ privacy, and the appropriate use and protection of participants’ data are paramount. Imperial College will ensure the research complies fully with the requirements of the Data Protection Act 1998 and has sought advice from the Information Commissioner to ensure it does. All individually identifiable data (such as name and address) is dealt with in the strictest confidence. Individually identifiable data is stored separately from health and mobile phone use information to preserve confidentiality. In the short-term, participant data may be held by service providers contracted by Imperial College, but these service providers will be legally bound by non-disclosure agreements and strict data security requirements. All participant data will be stored long-term on a secure computer network at Imperial College. The results of this study will be published following independent review, but no individually identifiable data will ever be published.

Data may be shared with other researchers or with members of the international COSMOS consortium in other countries across Europe, which we cannot guarantee will have the same level of protection provided in the UK. However, the confidentiality of your data is very important to Imperial College and no individually-identifying data will ever be passed to international COSMOS partners or any other researchers.

Yes! The COSMOS study is a long-term project and will be ongoing for many more years. We try not to contact our participants unnecessarily, but this does not mean we have forgotten about you. We will provide a new questionnaire every few years and will be in touch when there is a live survey to be completed. In the meantime, our website is updated regularly with the latest developments and results from the study, and you can also follow us on Twitter and like us on Facebook for the latest information.

Your data remains valuable to our study – we would still like to follow your health and keep your information in case you ever return to this country. Please update your address in the participant portal and stay tuned for more information.

Every COSMOS participant has the right to withdraw at any time, without providing a reason. If you are considering withdrawing from the study, please contact the Freephone number on 08000 270 270 or email us at ukcosmos@imperial.ac.uk.

If you decide to withdraw, please choose one of the following options concerning future contact and use of information:

• 1. No further contact – this means that COSMOS would no longer contact you directly, but would still have your permission to retain and use information provided previously and to obtain and use further information from your health records.
• 2. No further access – this means that COSMOS would no longer contact you or obtain further information from your health records in the future, but would still have your permission to use the information provided previously.
• 3. No further use – this means that, in addition to no longer contacting you or obtaining further information, COSMOS would destroy all of your information previously provided.

We would like to remind you that you are free to withdraw your voluntary consent at any point, and doing so will not affect your healthcare, healthcare rights or your relationship with your mobile network operator.

Please refer to the Information Booklet (available below) for more information. For all other enquiries, please don’t hesitate to get in touch with the team on our Freephone helpline on 08000 270 270 (Monday – Friday 8.00am – 5.30pm, excluding Bank Holidays). Alternatively, we can be reached via email at ukcosmos@imperial.ac.uk or through the contact form below.