About the Intestinal Failure Registry
The British Artificial Nutrition Survey (BANS) was established in 1996 and previously relied on the voluntary contributions of health care professionals to report data on adults and children receiving long term enteral or parenteral nutrition. The reporting of parenteral nutrition data moved to the BAPEN Intestinal Failure Registry and reporting has been mandated for commissioned Intestinal Failure and Home PN centres in England by NHSE which financially supports the Registry. The IFR receives data from all parts of the UK.
The provider of the IFR on behalf of BAPEN has changed from 1st July 2026 to NHS Outcome and Registries Programme (ORP). The aim of the new IFR is to have a UK-wide, comprehensive registry of all patients with Type 2 & 3 intestinal failure that allows data to be captured and reported at both local and national level.
It is no longer possible to enter any data onto the old Streets Heaver platform. Data from 1st March 2026 until the new system goes live must be collected using an interim data collection tool that has been developed by NHSE. All commissioned intestinal failure service providers were sent this tool and instructions for how to complete. This interim collection is now finished.
Every adult and paediatric intestinal failure / HPN centre should have a representative for the IFR working group. This will enable IFR updates to be communicated effectively. If your service does not yet have an assigned IFR representative please contact IFregistry@bapen.org.uk to provide details of a suitable person at your IF centre for this.
Further information about the new IFR will be shared via the IFR working group. If you have any queries in the interim see the below FAQs or contact IFregistry@bapen.org.uk
Please do not send NHS/CHI/HCN numbers or patient identifiable information via IFregistry@bapen.org.uk or any Bapen email address.
Frequently asked questions about the IF Registry
How do I access the new Intestinal Failure Registry?
Lead working group contacts for each Adult IF/HPN centre in England and Northern Ireland, and key people in Scotland and Wales were sent an email on launch day 1st July – containing new IF link and how to access their account.
It is available via the IFR URL: https://www.outcome-registries-platform.nhs.uk/IFR/ifr/SignIn
How do I get a login?
Many existing users from the Streets Heaver system will have access to the new system – your username is your hospital work email address.
If you have never used the system and do not have access to the correct IF centre or have moved locations please contact England.support@outcomeregistries.nhs.net
You will then need to be approved by your IF working group lead for your Trust
Where do I access Support?
If you experience any difficulties accessing your account, setting your password, or using the system, please contact us: England.support@outcomeregistries.nhs.net
Training
If you have not yet attended a training session, the next available dates are listed below. Please use the links provided to register:
Supporting materials are available in the Resources section of the platform and are also downloadable below.
All existing IFR patients have been migrated to the new platform.
For existing patients with a vascular line already inserted, please create a new Vascular Access record and re-enter the patient’s active device insertion data. Once development of the updated dataset is complete, you will be notified and asked to finalise the record, which will include additional data fields.
Is the IF Registry only for England?
All centres for Intestinal Failure and Home Parenteral Nutrition designated under NHS England commissioned services are mandated to submit via the IF Registry. Northern Ireland, as a commissioned IF service, also reports as a mandatory requirement of healthcare commissioning. From 1 st July IF/HPN centres in Scotland and Wales can now also contribute to the registry to continue to inform and benchmark services across the UK.
What about Paediatric IF Registry?
Work is still ongoing with the Paediatric Registry and will be launched later in summer 2026
Interim data (March 2026-1st July 2026)
All interim data collection using the collection tool has now ceased. Closing date was 22nd June 2026.
What will happen with the interim data collected?
It will be bulk uploaded once the new IFR platform is launched.
We didn’t complete the interim data collection tool- what happens now?
You can backdate any data onto the new system.
What is the CHI number and Health & Care number?
These are equivalent to NHS number and are used in Scotland and Northern Ireland respectively. It is not applicable to organisations in England and can be left blank.
