Latest IBD Registry data submission and site numbers
As we approach the end of the year, the Registry team would like to thank all the IBD teams who have now joined the project for all their hard work. We’ve reached an important milestone in November with 20 sites now having submitted data, giving a total of 17,328 records. More records will be uploaded in December as we now have 44 teams who have completed their registration with NHS Digital. If you have data you’d like to upload and need any help at all please contact Mark at firstname.lastname@example.org
Altogether, 176 IBD teams from across the UK have registered to participate, and there are 78 sites ‘live’ with a system for data capture, using a variety of different data entry methods (e.g. web tool, patient management system, local system etc). If you’re in one of the teams that haven’t yet registered please contact IBDProgramme@rcplondon.ac.uk to find out more about joining in.
Important information about the transition from audit to IBD Registry
As you know, the UK IBD audit team at the Royal College of Physicians (RCP) have delivered their final report, and data collection to support audit and quality improvement in IBD is now moving to the IBD Registry. Clinical teams can participate using their own choice of data entry system to suit local needs – including some existing local systems.
The RCP Biologics web tool will be closing in mid-January. All sites who want to retain their biologics audit data should make arrangements for this to be exported. You will receive an email from the IBD audit project team at the RCP explaining how to do this. Those users who want to import this data into the IBD Registry Web Tool should contact the IBD Registry team by emailing Mark at email@example.com. The RCP biologics audit data will no longer be accessible to sites after the RCP web tool closes in mid-January.
As part of the transition, we’d really encourage teams to attend 10 years of the UK IBD audit: framing the future at the Royal College of Physicians in London on Friday 3 February 2017. The meeting will celebrate the successes of 10 years of the IBD audit programme and outline opportunities for continued quality improvement using the Registry. There will be time for networking and best practice sharing. Click here to book your free ticket
The first 30 people to register will be also eligible for a £50 reduction against their travel arrangements if booked by 15th December. If you would like to take advantage of this early booking offer, please select the General admission – Early bird £50 voucher ticket (details on claiming this offer are provided on the ticket).
Funding for 2017/18 and letter from the BSG to NHS Trust CEOs in England
A letter was recently sent to IBD Clinical Leads at hospitals in England explaining that with the loss of NHS England funding for the IBD Biologics Audit and Quality Improvement Programme and its transfer to the Registry from February 2017, the BSG would be seeking an annual subscription payment from NHS Trusts to cover part of the cost of running the programme. The subscription has been set at £2,500 per annum, in line with other national audits. Users of the Web Tool will be asked to pay an additional £1,000 per annum. We will shortly be writing to Trust CEOs reminding them of the importance of the Biologics Audit in terms of quality and safety, and seeking their commitment to subscribe in the coming year. A copy of the letter to Clinical Leads is available on request from firstname.lastname@example.org
What to do next
If you’ve registered to join the IBD Registry you will have information about what you need to do to participate. If you haven’t already done so, please register to be part of the programme using the form here.
If you’d like more information on any aspect of joining the IBD Registry or entering data please contact email@example.com
Find out more about…
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...
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...
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...
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...
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...