The IBD Registry annual report
There is no doubt that the Registry is a success story. From the Registry’s first beginnings in 2012, through the 2017 adoption of the clinical audit of biological therapies from the RCP Inflammatory Bowel Disease Programme, and onto the current day, its key aim is ensuring that IBD clinicians have the most comprehensive information possible on the disease journey of their patients. It (the Registry) began with less than ten contributing clinics and today has access to almost 60,000 patient records submitted by nearly 90 IBD clinics in England and Wales.
Along the way, the IBD Registry has created and developed a number of data platforms and tools that support the continuation of the national clinical audit of biological therapies, as well as the wider goal of creating a national register of people of all ages with IBD.
However, the report also acknowledges the need for improvement and refinement to their methodology and there are several recommendations on how to make it simpler for IBD teams to effectively record patient data. These include improving the usability of the tools, more guidance to IBD teams on data capture and how best to obtain patient consent. It also notes the significant call on staff workload needed to comply with government requirements on patient data protection and suggests clinics deserve more support from the Registry in terms of bespoke feedback on their data to minimise errors.
‘We hope the results and commentary prove of interest to clinicians and others involved in managing IBD, as well as to the 500,000 people living with the disease in the UK,’ comments Dr Bloom. ‘We as a Registry intend to use this newly maturing depth and width of data to provide increasingly useful information back to clinical teams to support them in their drive for better, safer care for patients.’