We follow best ethical and legal practice to ensure that all information collected about patients is handled in confidence.
When you join the IBD BioResource you are assigned two unique Study IDs; one to identify any samples you donate and one to identify your personal records. Your personal data is kept separate from data relating to your sample. These two sets of data are stored on two different secure databases and access to these data sets is strictly restricted to the appropriate team of staff.
The clinical team, comprised of research nurses and administrators, only have access to your personal data such as your name and contact details and this enables them to contact you about participation in further studies. Members of laboratory staff are not given any personally identifiable information about you and only have access to laboratory data, including genetic data. This system ensures that no member of staff has access to both your personal details and any genetic information about your samples. Clinical information about your disease course, severity etc is recorded in a separate database and can only be accessed by the clinical team.
The purpose of the IBD BioResource is to support further studies but before we ever pass your details to any research study you will be sent an invitation. Unless you respond to the invitation to inform us that you would like to participate we will not pass on information about you. Before any data is made available to researchers it is ‘de-personalised’ – i.e. all identifying information such as name, address and date of birth is removed. Data is not used or made available for any purpose other than for research and you will never be identified personally in any report or publication.
What we do with your personal information as a member of the BioResource
You can download a copy of the NIHR BioResource Privacy Notice. This explains what we do with the information we hold about you, how you can request access to this personal data, and other data rights.
What we do with personal information for users of this website
This website does not store any information that would, on its own, allow us to identify individual users of this service without their permission. Any cookies that may be used by this website are used either solely on a per session basis or to maintain user preferences. Cookies are not shared with any third parties.
Google Analytics: We use Google Analytics to monitor traffic levels, search queries and visits to this website. Google Analytics stores IP address anonymously on its servers in the US, and neither CIVIC or Google associate your IP address with any personally identifiable information. These cookies enable Google to determine whether you are a return visitor to the site, and to track the pages that you visit during your session. We are committed to protecting your privacy, in accordance with the Data Protection Act and undertake not to use any information we may hold about you for any purpose other than that for which it was collected.
- We do not automatically capture or store personal information through our websites except in the cases outlined below. Under no circumstances, do we use your data for anything other than the purpose for which it has been collected
- Other sites will have their own privacy policies and we cannot be held responsible or liable for how they may use your data
- You can opt out of cookies at any time, following the instructions in your browser. These are typically found under ‘Tools’ and ‘Options’ (PC) or ‘Preferences’ (Mac) though the details vary from browser to browser. Detailed instructions on how to control cookies can be found here.
Last Updated on