Consent and patient information
for hospital IBD teams
Our consent form and Patient Information Leaflet were updated in early 2023 (to Version 4.2). As part of the update to Version 4 in early 2022, the consent process was changed to make it faster and easier. People with IBD can now join the Registry directly using our online consent form (paper forms are also available). This means that IBD teams no longer need to collect and record patient consents for the IBD Registry on their clinical systems. We hope this will reduce data collection work for clinical teams. You can access a list of your consented patients through our Data Access Portal (updated daily).
Telling your patients about the IBD Registry
We still very much encourage IBD teams to invite their patients to join the Registry, and we have a pack of resources that teams can use to share our online consent form with patients – please view here for more information.
We have more information for patients about how to consent to the Registry here.
Accessing your list of consented patients
You can obtain a list of patients at your Trust or Health Board who have consented using our new consent process (version 4) by logging onto our Data Access Portal (only accessible via an HSCN connection). This list also includes patients who have withdrawn their consent.
It can be found using the following pathway: Trust (or Health Board) / CONSENTS_not_uploaded / From_Registry
- The file called consent_Trust (or Health Board) _no_names.csv must be used with our Extract Filter Tool (see more below) to ensure patients who had the old version of consent and have also consented using version 4 will be included.
- The file called consent_ Trust (or Health Board) _with_names.csv includes patients’ names, which can be used by your clinical team as a record of who has consented using version 4 via our new process.
How to send us paper consent forms
Any paper consent forms completed by your patients should be scanned and uploaded as a PDF document to the IBD Registry by logging onto our Data Access Portal (only accessible via an HSCN connection). We would appreciate if you can ensure all mandatory fields have been completed before uploading.
Paper consent forms can be uploaded using the following pathway: Trust (or Health Bo CONSENTS_not_uploaded / To_Registry
You can find more information on how to upload completed consent forms to the IBD Registry in the guide you received when you signed up to the portal.
Extract Filter Tool
Our Extract Filter Tool is a desktop application that can be downloaded and used by NHS Trusts to filter their data extract files so that they are only sharing permissioned records with the IBD Registry. This will ensure your data files only contain data consented using our revised (V4.2) consent process or allowed to flow under the s251 provision.
IBD teams in England can also use it to ensure compliance with the national data opt-out (see more below).
We have more information about the Extract Filter Tool here.
National data opt-out and the IBD Registry
The national data opt-out for NHS Trusts in England came into force on the 31 July 2022. It allows patients to opt-out from their personal information being used for planning and research purposes without their consent. However, a patient can still consent specifically to activities that they are happy for their data to be used for.
So if a patient has chosen the national data opt-out, but also given consent specifically for the IBD Registry, this consent allows their data to be shared with us.
If a patient has opted-out and has not consented to join the IBD Registry, then their data must not be shared with us.
IBD teams can use our Extract Filter Tool to ensure compliance with the national data opt-out (required only in England). Please note: this can only be done by using NHS Digital’s MESH system to obtain a list of patients who have not opted out. We have further guidance on preparing your files to comply with the national data opt-out.
NHS Digital has more information about the national data opt-out on their website.