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 is to change from 1st July 2026. 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 have been sent this tool and instructions for how to complete. If you have not received this please contact IFregistry@bapen.org.uk
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
Frequently asked questions about the IF Registry
When I click on the Intestinal Failure Registry link it is broken – why is that?
It is no longer possible to add data onto the old platform for the IF Registry (Streets Heaver). Data must be collected using the interim data collection tools for all patient events from 1st March 2026 and stored locally until the new platform is launched.
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. As BAPEN is a UK wide organisation we encourage reporting via the IF Registry from Scotland and Wales to continue to inform and benchmark services across the UK.
How do I complete the interim data collection tool?
Please see the instructions that are issued with the tool. The patient data worksheet must be completed for each event along with additional sheets for the activity being captured e.g. outpatient attendance. If you need further information or have not received the tool and instruction please contact IFregistry@bapen.org.uk
Do I need to complete an interim data collection tool for every patient event?
Yes it needs to be completed for each event that requires recording.
What will happen with the interim data collected?
It will be bulk uploaded once the new IFR platform is launched.
Can we use our own data collection tool instead of the one issued by NHSE?
No, the interim data collection tool has been developed in this format so it can be uploaded on to the new IFR when it launches. Other data files will not be compatible with the new IFR.
Where should we store the interim data collection tools?
You should follow the instructions that were issued with the interim data collection tool and ensure that your data files are stored and managed in accordance with your organisations data protection and information governance policies.
What is the ODS code?
This is your organisation data service code, a unique code for your health trust. You will be able to find out this code from managers in your service.
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.
