Hello from the IBD Registry in our ‘new form’!  We formally took over the responsibilities for the IBD Registry from the BSG at the BSG Annual meeting in June 2018, with an official signing from the outgoing BSG President, Martin Lombard. 

Our new title is the IBD Registry Ltd, a not-for-profit company dedicated to improving the care and treatment of IBD, a mission we intend to fulfil by providing insight and information based on our dedicated analysis of IBD data. 
Things about the Registry will not look very different.  We have the same logo, same tools, similar communications – the BSG-run Registry has given us a well-established platform to move forwards from.  It’s worth a quick recap to look at what the IBD Registry is doing that can support clinical teams, and how we hope that you can support us.
First, our clinical IBD systems.  A few years ago, we developed (in partnership with Chameleon Information Systems) a Patient Management system (PMS) for IBD patient management. Many of you have this installed at your hospital sites.  For those for whom installation of the PMS was problematic, we developed the same software as a Web Tool (i.e. web based, so doesn’t need installing at your site).  This has proved very useful to a number of sites.  If you need any information on our IBD clinical support systems, please let us know – contact us on support@ibdregistry.org.uk

Data is all

We want IBD data!  We depend in large part on the goodwill of clinical teams to enter this, and we try to make the systems to do so as simple as we can, to fit in with the realities of clinical life.  We are currently working with Chameleon to redesign the software to be a better fit and support for clinical workflow, and this is a high priority for our new team.  We have also as a priority boosted our active support (email: support@ibdregistry.org.uk and phone: 020 3393 3969) for sites using the data entry tools.  We really appreciate the work you do to enter IBD data , and we want to do all we can to make it as smooth as possible.  We now have 42,000 patient records available to link with Hospital Episode statistics (HES), and our data analytics team is now able to develop some guiding insights and information from these.   We aim to return the information results of our data to all submitting sites as a quarterly report, which we hope that you find useful.

Quality Accounts

IBD is listed for 2018-19 on the HQIP Quality Accounts list, and the IBD Registry is the provider for this.  Trusts are required to report on their compliance with Quality accounts. The IBD Quality Accounts tracks a set of 7 KPIs relating to IBD treatment (currently with a focus on biologics-related treatment); these are all given on the HQIP website (www.hqip.org.uk).  We have an additional service for Audit departments where we can track and report on any given site’s performance against KPIs, reporting cumulative results quarterly (so that change in performance can be seen).  We believe that saves clinicians and Audit teams alike valuable time.  We are just about to invite sites to take part in the 2018-19 IBD Quality Accounts round, targeted for the end of year results due by June 2019. If you, or your Audit department would like to know more about this service, please email us on our support address.  

Research Projects platform

Are you planning a research project involving tracking a cohort, entering data and analyse it for results ?   Our Web Tool clinical systems platform can also be used as a supporting infrastructure for this, and has been used successfully already in projects such as VEST (real world outcomes study of vedolizumab) and ASE (anaemia service evaluation).  

That’s just a quick summary of some of the things that we’re doing to support clinical teams.  We have a new IBD Registry team now coming into place, and we are keen to hear back from you – your suggestions and feedback – please do email us on support@ibdregistry.org.uk.  As we move forwards in our journey in our new not-for-profit format, we look forwards to hearing from you. 

Have a great summer!