What happens to my data?
For full details about how we manage patient data and anonymity please see here.
What happens to my blood sample?
Once your blood sample has been collected it is sent to our laboratory for processing. The scientists separate your DNA from the other components in your blood, such as sera and plasma, which can be used for measuring biomarkers (indicators of cellular function and health status). Your DNA is passed to the Wellcome Trust Sanger Institute for whole genome sequencing and the information that is seen in your genes can then be used to better understand the causes and disease processes involved in Crohn’s disease and ulcerative colitis. The information in your DNA, alongside information you give us in questionnaires, will also be used to decide whether you are suitable for invitation to the research that we support.
Can I take part if my hospital isn’t on the list of open sites?
We can only recruit patients from NHS hospitals that are working with the IBD BioResource. This is because we need your clinician to provide information about your illness and we would not be able to have that information if your hospital is not set up with us. Please do check here to see if your hospital will be recruiting to the IBD BioResource soon.
Can I take part if I no longer attend an NHS hospital clinic for my care?
We are only recruiting patients through NHS hospital clinics. Therefore, at the moment if you do not attend a clinic, or if you attend a private hospital for your care, you will not be able to join the panel.
Can my child take part?
At the moment we are only recruiting patients over the age of 16 to the study. However, we are planning to extend this to paediatric patients in the future. Please check our progress to for up to date information about the study.
Can I take part if I have microcolitis?
No, we are not recruiting patients with microcolitis.
Can I take part if I have IBS?
No, we are only recruiting patients who have a diagnosis of Crohn’s disease or ulcerative colitis.
Can I just take part in the IBD BioResource and not the NIHR BioResource?
No, you will consent to take part in both, and it will not be possible to sign up to one panel and not the other.
What do I do if I no longer want to take part in the IBD BioResource?
Leaving the IBD BioResource is very straightforward, you do not need to give a reason for your decision and withdrawing will not affect the quality of healthcare that you receive.
Please contact us on firstname.lastname@example.org with ‘Withdraw from BioResource’ in the subject line, include your name, address and date of birth in the email, and we will initiate the withdrawal process. Alternatively, you may inform a member of the research team where you were recruited to the IBD BioResource that you would like to withdraw and they will let us know for you.
You can withdraw from the IBD BioResource at any time, once you have withdrawn we will not contact you again for any BioResource related studies.
Thank you for your support to date, we hope you have enjoyed the experience and we appreciate your time and commitment to our research studies.