Clinical News

IBD Registry News – July 2017

Friday, 30 June 2017 11:38

IBD Registry Symposium at BSG2017 in Manchester

A very successful session was held at the BSG Meeting with a broad Registry update from Fraser Cummings, a patient perspective from David Barker including a video message from Carrie Grant, an introduction to the new Data Visualisation charts on the Registry Web Tool from Mark Allan and interim findings from the Anaemia Service Evaluation Study being conducted using the Registry Web Tool.

Perhaps the most eagerly awaited presentation was from Keith Bodger providing an insight into the analysis and reporting that is now becoming possible by combining the Registry and HES data. Keith also presented a summary form the recent survey on how best to present Registry and HES data back to sites and thanked everyone for their responses.

The presentations from the Registry session will be made available on the IBD Registry Website over the next few weeks:

Caldicott Guardian Opportunity

The Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it for more information.

IBD Registry 2017 Roadshows

The 2017 Roadshow has now visited 6 cities in England and Wales, reaching over 123 IBD doctors, nurses, audit leads and other team members from over 40 trusts or health boards. With a focus on practical information and action planning, the meetings provided a chance to think and plan away from the hospital, as well as a forum to share experiences and tips. The most common challenges and proposed solutions can be found via the further information link below.

A meeting is planned for Scotland later in the year, and you can register your interest at

Quarterly Data Submission

Thank you to everyone who uploaded data to NHS Digital at the end of June. The next data submission deadlines are 30th September and 29th December. If you need any help at all in preparing for this, or if you have not yet registered with NHS Digital, please email This e-mail address is being protected from spambots. You need JavaScript enabled to view it . Once you are registered with NHS Digital, please make your first data submission as soon as possible to test the process and familiarize yourself. Please do not wait for the deadline date to do this as it is difficult for the Registry and CIMS Support services to resolve any technical issues at the last minute.

You will not cause any problems by uploading data more frequently. The data deadline is the point at which NHS Digital will create a new extract of the complete dataset, pseudonymise it and provide it to the Registry for analysis.

Accelerate, Coordinate, Evaluate (ACE) Programme

Thursday, 29 June 2017 14:27

Improving diagnostic pathways for patients with suspected colorectal cancer

The report looks at 10 projects in England the ACE Programme supports, each looking at forms of Straight to Test as a way of improving the diagnostic pathway for patients with suspected colorectal cancer. All projects worked towards the 28-day target (from presentation to diagnosis/ruling out of cancer) put forward in the 2015 Cancer Taskforce report with promising results. The projects achieved a shorter interval from presentation to first diagnostic test, resulting in confirmed diagnosis within 1-2 weeks. It also finds that almost 60% of outpatient appointments can be removed although for some patients, including those who are elderly or who have complex conditions, an initial outpatient appointment remains entirely appropriate.

A series of recommendations are included as well as practical resources including referral forms, support guides and STT pathway diagrams which should be useful for both clinicians and providers. All resources can be found on the ACE reports and resources page.

For more information on ACE's work on colorectal pathways, please email This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Research Priorities for Alcohol-Related Liver Disease

Friday, 23 June 2017 13:54

Alcohol-related liver disease accounts for the majority of UK liver disease, which is the third most common cause of premature death in the UK. It has had disproportionately little research attention or spending in the past, despite its impact on patients and their families, and there are still many questions about the diagnosis, treatment and care of the disease that remain unanswered.

Traditionally, the focus of medical research is decided by funders and researchers. There is often a mismatch between what gets researched and what would actually make a real difference to the lives of patients. The James Lind Alliance (JLA) offers a process to ask patients, carers and health professionals to identify and then prioritise the unanswered questions that concern them most. In 2014, the National Institute for Health Research (NIHR) asked the JLA to run a Priority Setting Partnership (PSP) to find unanswered questions about the prevention, diagnosis, treatment and care of alcohol-related liver disease that are important to the people it affects. This is the first known PSP involving an alcohol-related condition.

This report explains the process that was followed to reach the agreed list of research priorities, what the priorities were and who was involved to make sure that it was independent and fair


Professor David Sanders wins The Bengt Ihre Medal

Wednesday, 07 June 2017 12:41

The Bengt Ihre Medal, the most prestigious award in Swedish gastroenterology, has been awarded to BSG member Professor David Sanders. This International Award has only been conferred to UK gastroenterologists on 3 previous occasions in its history. Professor Sanders has said he is "delighted and feels lucky".

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