Annual Industry Forum

Wednesday 9 December 2020

5 – 7 pm

Online forum for healthcare industry colleagues working in the IBD

Contact to register

Join us for this virtual, interactive meeting. Topics include:

  • Our unique data set featuring data on treatment pathways, outcomes and the impact of COVID-19 on over 50,000 IBD patients in the UK
  • Combined patient-entered and clinical data that gives IBD teams a 360-degree view for the first time
  • Opportunities for industry partners to engage with our new research-ready Registry and pharmacovigilance platforms

Who should attend?

  • Medical and commercial roles from pharma, diagnostics and medical devices companies working in IBD

Hear the latest insights from our speakers

Our Medical Director and our Clinical and Academic Leads are all Consultant Gastroenterologists; our CEO brings the IBD patient experience to our group

  • Stuart Bloom
  • Keith Bodger
  • Fraser Cummings
  • Nick Kennedy
  • Liz Dobson

As well as group discussions, individual ‘corridor conversation’ break-out sessions with panel members will be available.


Join us to find out more about our current interests and activities, as listed below.


Our treatment data

We have had a particular focus on biological agents and corticosteroids as these are widely referenced in the BSG consensus guidelines on the management of IBD. However, we try to include in our analyses all drugs in use, recognising the often complex treatments patient receive. With the rise of biosimilars and the resulting changes in commissioning, there has been considerable movement in treatment patterns, allowing us to study sequencing of biologics in detail.

We look forward to presenting our work in this area at the Forum.

Our COVID-19 response

On the 1st April 2020, in response to the UK Government’s mandate to IBD teams to identify all patients at high risk from COVID-19 and working closely with the British Society of Gastroenterology in their risk definitions, we created an online self-assessment risk tool for patients which included returning their results to their clinical teams across the UK.  Within 2 months, 34,000 patients had used the IBD COVID-19 Risk Tool, with results being returned to 178 NHS Trusts across all the UK.

Since then we have also undertaken a specific analysis of our database focused on producing insights to support IBD clinical teams during these challenging times.

From data entered by patients, the assessed risk levels as at April 2020 (the risk levels are as defined in the BSG guidance for risk in IBD patients and COVID-19)

Patient-entered data – the way forward

The Registry is restructuring, and a crucial element is our shift towards patients, while keeping our established clinical audience.  The COVID-19 Risk Tool was our first chance to trial linking with patients directly, and its success shows the way forward.

We think that patient-entered data enriches and complements clinical data. To validate this concept, Stuart Bloom and Nick Kennedy have led a study involving 11 centres and their COVID-19 IBD Risk Tool data. They’ll present their findings on the role of patient-entered data, and whether it’s robust enough to be a data source in its own right.

Number of patients in progress and completing the COVID-19 IBD Risk Tool in the first two weeks

Registry 2.0

Reshaping the Registry for the 2020s

The original Registry structure was designed over 10 years ago, based on the idea that clinical data should be captured once and used for many purposes. Our ethos remains the same, but the NHS and data landscape we operate in has changed in the past decade. Looking to the future, we’ve reshaped and rebuilt the Registry, so we can continue to be a leader for the next 10 years.

Our interactive map shows the 178 hospitals we’re engaged with across the UK . Our ambition is to reach every hospital with an IBD service. Our CEO Liz Dobson has been leading our strategic transformation, and will present the story so far, and where we’re headed.


We launched our observational drug safety study just over a year ago, and we now have 3 drugs under study.  Our innovative national secure and approved clinical data platform allows us to run pharmacovigilance studies without paperwork – easier for clinical teams, more efficient for study sponsors, and providing results that support patient safety.

Drug pathways to market can be long, and we are used to setting up studies significantly in advance ready for market authorisation.  If you have a drug in the pipeline for use in IBD that you wish to conduct post-authorisation  surveillance on in the UK, please contact us on


Save the date

We look forward to seeing you on the 9th December

In addition to presentations from us, expect the usual lively group Q&A session. We’ll also set up breakout rooms for individual ‘corridor conversation’ meetings for commercially sensitive conversations.

Please email to register and receive your invitation to our 2020 IBD Industry Forum

We look forward to seeing you there!


IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.