There is considerable progress happening with the Intestinal Failure Registry. NHS England in conjunction with BAPEN, and the new host of the registry – NEC software solutions, have completed a lot of data governance work to ensure that the appropriate data protection agreements are in place. In addition, NHS England has taken on the risk from all the devolved nations pending further agreements. This means that for the first time the governance for the whole of the UK has been clearly established.
You may have seen invites to training on the new system. At the moment this is purely for the adult system. The adult system is being rolled out first with expectation that paediatrics will follow within a few months. Dates will be issued for paediatric specific sessions in the future, but you can of course join adult ones if you wish.
You will also have seen requests to submit cases via the interim data collection tool. Cases will be able to be retrospectively added to the registry when it goes live but any cases submitted via the interim tool will be uploaded into the new system for you. In addition, cases submitted this way enable the database technicians to do additional testing on real data.
Existing data from the previous system is being integrated into the new system as we speak. This is quite a laborious process of coding and checking that items match in the databases but I am assured that this is all going ok.
Many thanks for all your help.