IBD Registry Symposium at BSG

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. www.ibdregistry.org.uk

CALDICOTT GUARDIAN OPPORTUNITY

The Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact support@ibdregistry.org.uk 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 are below:

CHALLENGE SOLUTION
Data entry Pick a sub group

Plan your approach

Apply for a grant

How to manage the consent process Consent by post

During infusion clinic

IT barriers Enlist support of patient panel

Quality accounts

How to get the team on board Meet with team & show them the data

Feed back to MDT

Remember Rome wasn’t built in a day

Understanding more about the Registry data entry options Contact support@ibdregistry.org.uk

Request a demo from PMS suppliers (e.g. CIMS, Emis)

Speak to users of different systems

A meeting is planned for Scotland later in the year, and you can register your interest at http://ibdrroadshow2017.eventreference.com/

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 support@ibdregistry.org.uk. 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.

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

We are hiring – three systems and data science roles

The IBD Registry is a small, fast-moving and innovative organisation working in the world of healthcare data to provide insights and solutions that benefit people with inflammatory bowel disease (IBD). We are looking for three systems and data science professionals to...

read more

COVID-19 IBD Risk Tool wins award

We were thrilled to win an award at the  Communique Awards for our work in creating and communicating our COVID-19 IBD Risk Tool for people with inflammatory bowel disease (IBD). The 2021 Communique Awards took place on 1 September and recognise excellence and best...

read more

2021 Annual Report on Biological Therapies in IBD

Clinical teams providing biological therapies for people with inflammatory bowel disease (IBD) are maintaining good practices of care despite increased pressures from COVID-19, according to the latest report from the IBD Registry. The second annual report on the use...

read more

Reflections in our birthday month

Unbelievably, it’s now 3 years since we set up IBD Registry Ltd as an independent not-for-profit organisation, following the original launch by the British Society of Gastroenterology (BSG) in June 2013. A birthday is a good time for reflection. We're owned and...

read more

Partnering for PINPOINT

The PINPOINT study (the Prospective Incidence of Paediatric-Onset Inflammatory bowel disease in the United Kingdom) is undertaking a UK-wide incidence study of paediatric IBD. The number of children newly diagnosed with inflammatory bowel disease (IBD) each year has...

read more
%d bloggers like this: