We’re updating the drug dictionary

Data

Drug Dictionary  Update

We are updating the core dataset, including the list of medications, in the drug dictionary. Many thanks to those of you who have already sent suggestions. If you have changes you’d like to propose please contact our Data Manager, Mark Allan, before the 29th September: [email protected]

Registry Participation

It’s great to see numbers continuing to grow, thanks to your efforts. Participation has increased from 25 to 38 sites over the past 6 months. A total of 28,224 patient records have been submitted and this is predicted to rise above 30,000 over the next two months.

Quarterly Data  Reports and Submission

Quarterly reports will be available in the next few weeks. Participating sites will receive a summary profile of the data they have submitted to the Registry. Sites that are uploading data as part of the Biologics Audit will also receive a summary showing compliance with the KPIs. Any teams who missed the deadline will receive an example data report.

The next data submission deadlines are 29th 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 [email protected].

Resources for sites

IBD Registry  Field Support Programme

The Registry has successfully made contact with most IBD teams, but there are some gaps. With limited resources and a small London-based team, it has proved challenging to reach 100% of hospitals.

To address this problem, the IBD Registry’s Industry Working Group (IWG) is launching a field support initiative in the autumn. Field based personnel from Dr Falk Pharma, Janssen, Pharmacosmos, Takeda and Tillotts will supplement the Registry team by contacting IBD leads on their behalf.

Field representatives trained by the IBD Registry team will visit hospitals in a non-promotional capacity to offer advice and support. Any information collected during these meetings will be held by the Registry and not by the pharmaceutical companies.

Sites will be notified by email and can easily opt out if they wish to do so.

Opportunities

Caldicott Guardian Opportunity

The Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact [email protected] for more information.

IBD Nurse & SpR Programmes

Dr Falk Pharma are hosting a Falk Forum on IBD & e-health on the 22nd September 2017 at the Midland Hotel, Manchester. The meeting will explore the new opportunities that e-health provides and will include further education, an introduction to social media and practical take home messages. IBD Registry Development Lead Richard Driscoll will be speaking about how to participate in the Registry. To register please go to www.drfalk.co.uk/falk-forum-59.

Core and Dr Falk are running an award for UK-based gastroenterology specialty trainees conducting an audit or quality improvement project in gastroenterology, liver disease or nutrition. The deadline is 17th November 2017. To apply, visit http://corecharity.org.uk/research/research-awards-information/.

Tillotts IBD Nurse Education Day and Recognition Programme will be held on the 17th November 2017 in Solihull. The Education Day is a practical and engaging event for IBD nurses. The IBD Recognition Programme recognises nurses or teams who have developed an innovative project to improve patient care in IBD. For more information please email [email protected]. Deadline for entries is 8th September 2017.

With our thanks for your continued engagement in the IBD Registry,

                                    

Dr Stuart Bloom, IBD Registry Chair                    Dr Fraser Cummings, IBD Registry Clinical Lead

Find out more about…

Latest News

Milestone HES reports released!

Data and reporting   Milestone HES reports sent to sites this week Earlier this week, HES reports were sent to all Registry sites that have submitted data to NHS Digital, fulfilling a long-held Registry aim to make information work better for patients, clinical teams...

read more

2017 Review

2017 has been a pivotal year in the development of the IBD Registry. Continued hard work from IBD teams across the country has resulted in 33,321 patient records being uploaded by 53 sites. Thanks to an idea from our Industry Working Group, we set up a data entry...

read more

HES reports

The IBD Registry team have realised a long-held ambition to use routinely collected hospital episode statistics (HES) data to supplement the clinical data collected by sites, in a ground-breaking initiative led by Keith Bodger

read more

Richard Driscoll 1950-2017

It is with great regret and sadness that we have to inform you of the untimely passing of our friend and colleague Richard Driscoll. Richard passed away on the morning of Saturday 21st October, following a cardiac arrest last week. He is survived by his wife Aviva,...

read more

Patient Records Pass 30,000

This month the IBD Registry achieved two participation milestones: we moved past 30,000 patient records (up to 31,614) and now have 51 sites submitting data to the Registry.

read more