Sections News

IBD Nixon Twin and Multiplex Registry

UK gastroenterologists are invited to refer concordant and discordant twin pairs, as well as families where three or more first degree relatives have an IBD diagnosis, to the twin/multiplex registry. We will collect epidemiological data and invite members to donate to a biobank. This will become a powerful research resource that will be available for research collaborations in the future. Further information about how to refer twins or families is available from Hannah Gordon, Senior Clinical Research Fellow (Gastroenterology), IBD Nixon TAM Registry Co-Investigator, Chelsea and Westminster Hospital, This e-mail address is being protected from spambots. You need JavaScript enabled to view it

IBD Registry Update

The first of three pilot sites for the UK IBD Registry started trialling the system on Tuesday 15th January. Launching later this year, the Registry will provide the first ever UK-wide repository of anonymised IBD patient data for prospective audit and research. By bringing this data together for the first time, the Registry Board aims to:

  • Provide local, regional & national data in order to better define the pattern of ulcerative colitis and Crohn's disease
  • Improve understanding of long term outcomes
  • Drive continuous improvement in patient care and access to care across the UK
  • Inform commissioning and service design
  • Support IBD research

Data can be entered either from existing databases, via a web portal, or by means of a new IBD Patient Management System (PMS), which has been developed by Chameleon Information Systems Ltd (suppliers of InfoFlex) under the guidance of Clinical Lead, Fraser Cummings. Fraser and his team have designed the PMS so that data can be easily entered during the consultation. The PMS will also provide real-time benefits such as a clinical summary of each patient at a glance, to save time leafing through paper notes, and work lists to support, for example, azathioprine monitoring, biologics follow-up or MDT meetings. Subject to local IT arrangements, the PMS can also be integrated with local PAS to further minimise data entry.

The pilot stage is due to run till March, and the launch of the Registry is scheduled for the BSG conference in June.

To find out more about the project, and how you can join, visit or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

IBD Biologics Audit and IBD Registry

The Biologics Audit

Almost half of UK IBD Audit sites have entered data into the biologics audit. Again I am most grateful to sites that have entered the data and I want to encourage those that have not. Firstly I would like to emphasise that this is a purely audit project and is not fulfilling the research aims of any group or individual. This is your data and we hope that by entering cases into the audit that you will get benefit from this.

We will be producing an interim national report on the biologics audit as part of the UK IBD Audit 3rd round which will be launched in June 2012 at the DDF meeting in Liverpool.

UK IBD Registry

The UK IBD Registry is currently being set up; Three areas of work are being progressed in between meetings of a full board containing representatives of all related professional groups:

  • Information Group developing the dataset and clinical benefits of the system
  • Governance Group looking into issues of confidentiality and consent
  • IT Group developing a specification and tender invitation

There has been regular communication with the other IBD projects, particularly the UK IBD Audit, and the importance of coordinating the development of the Registry with the current and next phase of the UK IBD Audit is recognised by everyone. The Registry system will be presented at DDF in June 2012 in Liverpool.

Drs Ian Arnott & Stuart Bloom

Biologics Audit element of the UK IBD Audit now live

The document below provides details on the Biologics Audit system for the UK IBD Audit which is now live at The system will allow IBD teams to capture excellent real time site specific data on the IBD patients that they are treating with biologics. The system will provide a means of providing data that many of us are being asked for on a daily basis by managers and commissioners and we hope that it will be of real use to IBD Services across the UK.

Best wishes,

Dr Ian Arnott, Consultant Gastroenterologist and UK IBD Audit Clinical Director

Health Professionals Survey – Fatigue and IBD

Marcia Darvell (Crohns and Colitis UK) and Professor Christine Norton (Buckinghamshire New University)

Crohns and Colitis UK have been awarded a £481, 242 grant by the Big Lottery Fund for a project on fatigue in IBD. The 4 year research project will examine the causes of fatigue and will pilot a fatigue assessment tool and interventions to improve the management of fatigue in IBD. The research is being carried out with our partners at Kings College London, University College London, Buckinghamshire New University and Addenbrookes NHS Trust.

The project is divided into a number of work packages. Currently, we have interviewed twenty volunteers with IBD. We will use these data to develop a fatigue assessment tool which we will pilot with people living with IBD.

To help us understand the level of awareness and information needs of fatigue in IBD among healthcare professionals, we distributed questionnaires at the BSG conference in 2011, and sent the questionnaire to IBD nurses as an online survey.

The survey has several limitations, particularly its self selected and relatively small sample (94 health care professionals). Despite this, the survey indicates a need for greater information on fatigue and IBD.

Respondents comprised: 42.6% IBD Nurse Specialist, 35.1% gastroenterologists, 22.3% other health care professional. We asked health care professionals how often IBD patients report fatigue to them - 37.2% responded 'sometimes', 35.1% 'often' and 20.2% 'very often'. Only 7.4% of respondents stated that patients rarely reported fatigue.

Most respondents' usual course of action, when faced with a patient presenting with fatigue with IBD in remission would be to check the haemoglobin level and treat if low (92.5%). Other frequent responses chosen were referral for other diagnostic tests (41.9%), advice on diet (36.6%), advice to take more exercise (33.3%) and advice to get more rest or sleep (31.2%). Actions mentioned by respondents in the open ended response section of this question, included:

  • Check disease activity and inflammatory markers
  • Holistic interview identifying stressors
  • Referral to IBD nurse, dietician or psychologist (the need for psychological support or referral was mentioned by many respondents)
  • Check drug side effects
  • Assess for depression

Despite 55.3% of respondents indicating that their patients often or very often report fatigue, and 92.6% of respondents indicating that patients report fatigue as a problem more frequently than 'rarely', the level of self rated knowledge among health care professionals was low:

  • 27.7% indicated that they had poor knowledge of the likely causes of fatigue in IBD
  • 59.6% rated their knowledge as 'fair'
  • only 13.8% rated their level of knowledge as good or excellent.

The survey results indicate that 40.4% health care professionals who responded actively raise the topic with their patients (often, very often or always). However, 33% only raise the topic 'sometimes', 18.1% only 'rarely' raised the topic and 8.5% stated that they never raise fatigue with their patients. As the survey was filled out by a self selected group of respondents who are likely to have above average interest in fatigue, the results suggest that there is a need to increase the profile of fatigue.

A high percentage (68.9%) of health care professionals surveyed consider that IBD fatigue can be adequately treated in most or some patients,. However, given the perception of it being a treatable condition, the comparative reticence to ask about fatigue in clinics is more perplexing.

General comments included:

"I would like to receive some evidence based information to give advice to these patients"

"Fatigue is common and I think approach should be multidisciplinary including dietician, psychologist, gastroenterologists"

"Its effects are underestimated and poorly understood"

"It is the single most difficult symptom to manage as those who experience don’t seem to get any benefit from current strategies"

"I work with children and young adults, the latter in particular struggle with fatigue. It affects their ability to interact with their peers both at school and socially, this has long term implications for them in adulthood"

"Complex, under-rated, no resources to deal with it (psychologically) difficult to define, but common"

"I believe that fatigue is a major issue but unfortunately still poorly recognised as a problem to IBD patients"

"Very undertreated in primary care"

If you would like to help with our research (by volunteering for an interview) or have any comments or queries on the project please email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

A microsite dedicated to the project will be available on the Crohns and Colitis UK webpage in August 2011:

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