The University of Exeter and SYNEXUS Clinical Research Limited are committed to safeguarding your personal information.
This policy (together with our Terms and Conditions which can be found at https://www.synexushmr.com/Home/TermsAndConditions and any other documents referred to on it sets out the basis on which any personal data we collect from you, or that you provide to us, will be processed by us. Please read the following carefully to understand our views and practices regarding your personal data and how we will treat it.
For the purposes of the data protection laws, the Data Controller in relation to any personal data you supply is both the University of Exeter of Northcote House, The Queen’s Drive, Exeter, Devon, EX4 4QJ, United Kingdom and SYNEXUS Clinical Research Limited, Sandringham House, Ackhurst Park, Chorley, Lancashire, PR 7 1NY.
What data do we hold?
For the purposes of the study we collect certain personal and sensitive data (personal data) from you including but not limited to as follows:
- Full demographic details, including your name, address, date of birth, email address, gender, ethnic origin, marital status, employment status and highest level of education completed. Submitting these demographic details is a requirement for participating in this study because they are basic data that are used in statistical analysis alongside the information you provide in questionnaires and cognitive tests to give context and meaning to your information in relation to the information provided by other participants.
- Lifestyle information including physical exercise, smoking status, diet and cognitive activities
- Medical history including major conditions such as stroke, heart disease, Parkinson’s disease, and diabetes
- Major aspects of your brain health such as memory or reasoning that influence how well you perform everyday activities which we gather using validated cognitive tests
- Responses to a detailed mental health questionnaire including validated scales for depression, stress, anxiety, trauma, social cognition and mood
- Detailed information on everyday behaviour and ability to complete instrumental activities
All personal information will be treated as confidential.
In order to ensure that we can improve our site where required and to provide you with a good user experience, we collect information about your use, such as browser type and version, operating system and platform, information about your visit, including the full Uniform Resource Locators (URL), clickstream to, through and from our site (including date and time), tests you viewed or searched for, page response times, any download errors, length of visits to certain pages and page interaction information (such as scrolling, clicks, and mouse-overs).
How do we use your data?
Here are some of the ways we will use your personal data; this is not exhaustive, but is intended to provide you with an idea of the things that we may do throughout your relationship with the University of Exeter and SYNEXUS Clinical Research Limited. All personal and sensitive personal information is stored in an encrypted format in the Participant Database located in Azure West US Region. Pseudonymised data, or identifying personal data that has been replaced by an ID number or other artificial record to remove the possibility of recognizing an individual without additional information contained in a key, is statistically analysed as part of a cohort of approximately 30,000 participants by the University of Exeter and SYNEXUS Clinical Research Limited for the study of ageing and dementia. The pseudonymised data will be used for the publication of results of the study in academic/scientific publications or in resources for research, education and public engagement. We will maintain the data for use in future research projects or research archives. The University of Exeter will use identifiable data only for the purposes of participant contact and support. Identifiable personal data will be accessible to Synexus Clinical Research Limited and may be used to identify and recruit potential participants for future studies.
We may use your email address to send reminders, updates and to enable communication regarding any emerging safety issues and wellbeing.
What is our legal basis for processing your data?
You will be asked to consent to providing this information as part of the registration process for HMR.
However, your personal data is collected and processed by the University of Exeter to enable the University to carry out research in the public interest.
How will we share your data?
How long do we keep your data?
Your information will be held securely by University of Exeter so long as you are part of the study. When the study is completed University of Exeter will securely store your personal information for as long as is required for the purposes of the study but no more than 10 years then they will securely destroy them. University of Exeter will store all pseudonymised data indefinitely on an archive such as the University of Exeter’s open access archive, Open Research Exeter (ORE).
Synexus Clinical Research Limited and its Group Companies will retain your information for as long as needed to contact you about future clinical trials and to ensure we have your consent to process your data. You may withdraw your consent at any time.
If you choose to withdraw from the study University of Exeter will retain a record of your consent to participate in the study for 10 years after the study is completed. then they will securely destroy it. This record includes all versions of consent you gave including your name, date and time consented, and your registration ID. University of Exeter will also retain all anonymised assessment results data you have submitted as detailed above. If you choose to withdraw from the study, you will no longer be able to log into the study website. Your withdrawal of consent does not affect the data which have been collected prior to that.
Your withdrawal from the study does not affect your eligibility to continue receiving communication about clinical trials from Synexus and its Group Companies. If you would like to opt out from receiving such communication please send an email entitled “Unsubscribe” to firstname.lastname@example.org.
How do we protect your data?
All personal data and sensitive personal data is collected via the website www.synexushmr.com using Secure Sockets Layer (SSL) software, which encrypts the information you input. Personal and sensitive personal information will be stored securely by Microsoft Azure, West US Region and will be managed within the framework of Microsoft Azure governance procedures. Personal and sensitive personal information will be stored in separate databases in encrypted format and in a restricted area, known as a Participant Database, accessible by University of Exeter and SYNEXUS Clinical Research Limited and its Group Companies. All data extracted from the Participant Database for statistical analysis is pseudonymised and is stored in a separate database, known as the Results Database; this data set contains no link to any information that can personally identify you, such as name, telephone number or email address.
The pseudonymised data that we store in the Results Database will be transferred to, and stored at, a destination in the United Kingdom, in the Reporting Database. Data held in the Reporting Database may be shared with global researcher partners of the University of Exeter. Given the complexity and variety of the relationships that the University has with the many individuals whose data it processes, it is not possible to set out an exhaustive list of all the ways in which your personal data may be processed by the University for research purposes here. However, for each individual research project involving the collection of personal data, the research team will provide detailed participant information which will explain the processing of your personal data and which, if any, third parties your personal data may be shared with.
Personal information may be extracted from the databases and shared within Synexus Group Companies and these companies may use your information to keep you updated about clinical trials for which you may be eligible.
Where we have given you (or where you have chosen) a password which enables you to access certain parts of our site, you are responsible for keeping this password confidential. We ask you not to share a password with anyone.
Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.
Your rights and preferences
You have a number of rights in relation to the personal data that is collected and held about you:
- The right to be informed
- The right of access
- The right to rectification
- The right to erasure
- The right to restrict processing
- The right to data portability
- The right to object
In the information above and in the participant information sheets, we have provided information on how these rights apply in the Synexus Healthyminds Registry (Synexus HMR) Study and the implications of exercising these rights'.
If you have any questions about this policy, or any other aspects of your privacy with respect to the Synexus Healthyminds Registry (Synexus HMR) Study, or if you wish to invoke one of your above rights in respect of the data collected by University of Exeter, please write to us at the following email address HMRsupport@exeter.ac.uk:
College House G.03
St Luke’s Campus
The University of Exeter
Exeter, EX1 2LU
The University of Exeter’s Data Protection Officer who is responsible for monitoring compliance with relevant legislation in relation to personal data processed by University of Exeter, may be contacted by emailing email@example.com.
The Data Protection Officer of Synexus Clinical Research Limited and its Group Companies who is responsible for monitoring compliance with relevant legislation in relation to personal data processed by Synexus Clinical Research Limited, may be contacted by emailing firstname.lastname@example.org.
This Privacy Notice will be kept under review. Any changes will be updated on our website and communicated as appropriate.
Synexus Healthyminds Registry (Synexus HMR) 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.
You block cookies by activating the setting on your browser that allows you to refuse the setting of all or some cookies. However, if you use your browser settings to block all cookies (including essential cookies) you may not be able to access all or parts of our site.
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 University of Exeter and SYNEXUS Clinical Research Limited do not control the dissemination of these cookies. You should check the third party web sites for more information about these.