Data and Reporting
CAG News
Drug Dictionary Update
PMS News
Several Sarahs


Over 46,000 patient records!

A big thank you to all sites for the September upload! After the long period of waiting for the Clinical Audit Platform to re-open (see next article) we had our highest ever number of sites upload data, and we now have 46, 720 patient records on board (up from 42,276).   Thank you for both your uploads and for your patience while the Audit Platform reopened.

News from the Clinical Advisory Group

September was a busy month.  We also heard back from the Confidentiality Advisory Group (CAG) that all our applications had been approved.  The first of these was to be formally recognised as the Data Controller (it was this approval that allowed the Clinical Audit Platform to re-open);  the other key application was for extension to our s251 permission, which has been approved to September 2020.  However we are aware that within this two year extension period, we need to transition to a consented model.  We are already working hard investigating ways to make this transition happen smoothly and easily, and requiring as little additional effort from clinical staff as we can make happen.  We’ll keep you posted on our activities over the coming months. 

Update to the Drug Dictionary 
Additions to the list of drugs on the Registry clinical applications has now been approved and includes the newly available adalimumab biosimilars. At the request of users, the changes will also include additions to the dose units and drug frequencies that can be selected. The plan is for the dictionary change to ‘go live’ for web tool users in November.  The steps for sites using the PMS are a little more involved and we are working with CIMS to make this process as smooth as possible. We will also be publishing on our website all of the changes in an addendum to our Data Submission Framework, so that suppliers can be made aware of the changes they will need to make to their applications.


IBD Standards – moving forwards

In line with its objective of helping IBD teams to improve the quality of care for people with IBD, the Registry was delighted to be invited to contribute to consultations on the new IBD Standards and on a collection of metrics being developed by the NHS RightCare programme that will help IBD teams to compare aspects of their care with their peers. The opportunity to view these initiatives at this stage also gives the Registry insight into any changes that might be needed to the information that it collects from IBD teams.

PMS News

Users of the IBD Patient Management System are reminded that when entering information on a biologic review there is a second (short) page of items to be recorded that is accessed by scrolling to the bottom of the first page and clicking either the [Initiation] or [Review] button. In this way a more complete and clinically useful picture of the patient's progress on their biologic treatment is captured."

Plans for upgrading the software are advancing well and the inconvenience of the buttons not being visible unless the user scrolls down (or enlarges the window) are resolved in the next version - as are a number of other irritations that users have brought to our attention. Do let us know what improvements you would like to see when you use the PMS so that we can see what other adjustments are desirable.

More Staff (more Sarahs) = more Support for Sites

We are delighted to welcome Sarah Miles to our support team.  Sarah has worked in the retail industry for 5 years gaining sales and management experience, while studying Pharmaceutical Science at Kingston University. She mostly recently worked in production for a Pharmaceutical company manufacturing specials and training production via Good Manufacturing Practice (GMP). Her nickname most commonly used by friends and colleagues is Smiles. (a nickname will be most useful as we now have three Sarahs in the office).

With our thanks for your continued contribution to the IBD Registry,