We follow best ethical and legal practice to ensure that all information collected about patients is handled in confidence. We utilise a process called ‘pseudo-anonymisation’, which ensures that it is not possible for members of research staff to access both your personal details and experimental results about you.
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. Laboratory 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.
If you have any further questions regarding the important issues of confidentiality and anonymity, please contact us.