IBD Registry News - February 2016.
Submit your data
The IBD Registry is growing! Last time round, 8 hospitals submitted information on 8,037 IBD patients. The next submission opportunity is coming up at the end of January, when we hope that 5 more sites will submit their data for the first time. Another 6 teams are already in the process of registering with HSCIC to participate next quarter. The deadline for January data is Friday 5th February.
In other good news, we now have the go-ahead to appoint a data manager, so we hope to be able to provide sites submitting data in April with a first local report. We envisage this first report describing the demographic and clinical profiles of patients in the Registry, with analysis and interpretation becoming gradually more possible over time as the patient data becomes more complete.
Regional meetings update
We held meetings in London, Cardiff and Taunton in January, so we've now met with over 120 members of IBD clinical teams, and look forward to meeting more in Birmingham, Darlington and Glasgow. Slides are available at http://ibdregistry.org.uk/workshops/
Many teams are preparing business cases to support obtaining a patient management system or database; if you need help writing your business case, there's an example here http://ibdregistry.org.uk/wp-content/uploads/2014/08/3.-Business-case-example.pdf. With different data entry options available, if you're thinking of opting for a patient management system it's worth contacting suppliers (CIMS, Emis Health etc) direct to get an accurate cost estimate for your trust or hospital.
There are some places available at the following meetings:
BIRMINGHAM Friday 5th February Chair: Prof Tariq Iqbal
DARLINGTON Tuesday 1st March Chair: Dr John Mansfield
GLASGOW Wednesday 20th April Chair: Dr Ian Arnott
We'd really encourage you to attend, and to bring your team if you can. There is no charge to attend, thanks to support from Tillotts, Takeda, Janssen and Shire. For more information and to register please go to http://ibdregistry.org.uk/
Fourth report of the biological therapy element of the UK IBD audit
Latest UK IBD audit report shows further improvement for patients following treatment with biological therapies
The UK inflammatory bowel disease (IBD) clinical audit report reveals today that the majority of patients (80% adult and 77% paediatric) with Crohn's disease saw an improvement following biological therapies
This is the fourth report of the biological therapy element of the UK IBD audit. The purpose of this audit is to measure the efficacy, safety and appropriate use of the biological therapies infliximab and adalimumab, also known as anti-TNFα drugs, in patients with IBD in the UK. The audit also aims to capture patients’ views on their quality of life at intervals during their treatment.
The data presented in the reports demonstrate that biological therapies for IBD are effective and relatively safe treatments. Patterns of use are changing, with earlier use in patients with less severe disease. It is likely that this reflects more appropriate prescribing as physicians become more familiar with these drugs.
National and executive summary versions of both adult and paediatric reports are available on the Royal College of Physicians' website:
Biosimilar Medicines: all you need to know
Professor Chris Probert, Chair BSG IBD Committee
The announcement by NICE that anti-TNFs may be used, within licence, for patients with ulcerative colitis has coincided with the launch of two biosimilar infliximabs in the UK.
We (BSG) are arranging an educational meeting in conjunction with representatives from the Association of the British Pharmaceutical Industry Biological Medicines Access Group (ABPI BMAG), Hospira and Napp. Our goal is to deliver an educational event with talks from all interested parties as well as from MHRA and NICE. The meetings are on 9th (London) and 16th (Manchester) June and commence at 14:00.
- Download the agenda [ 619 kb ]
- Download the invitation letter [ 619 kb ]
- Download the reply form [ 619 kb ]
IBD Registry Preliminary Data Presented
At BSG 2014, Clinical Lead, Dr Fraser Cummings presented the first data on over 4000 patients from the UK IBD Registry. This presentation gives an idea of the trends that can be observed using Registry data, such as patients' smoking status or medication. One important development is the linkage with Hospital Episode Statistics (HES) data, which shows healthcare utilisation, e.g. the number of outpatient appointments and A&E admissions each year.
Early Adopters' Lead, Dr Matthew Johnson provided practical advice on using the Registry Patient Management System (PMS) to support patient care, and explained how he and his team at Luton and Dunstable University Hospital have successfully used the system to fund an additional IBD specialist nurse.
We also launched our new Registry Information Pack, a step-by-step guide to joining the IBD Registry, including information for clinical teams, IT and Caldicott Guardians as well as an example business case, PMS screen shots and letters.
Setting the Registry within the broader context of raising standards in IBD, the panel also included Professor Mark Baker, Director of the NICE Centre for Clinical Practice, Dr Ian Arnott, Clinical Lead of the UK IBD Audit and David Barker, Chief Executive of Crohn's and Colitis UK and Chair of IBD Standards and Dr Stuart Bloom, Chair of IBD Registry.
Summing up the meeting, Crohn's and Colitis UK Chief Executive, David Barker commented: "The work of the IBD Standards, Audit and Registry are really critical in terms of driving up standards of care for patients."
Questions about applying to the EME researcher-led workstream?
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