The Prospective Incidence of Paediatric-Onset Inflammatory bowel disease in the United Kingdom (PINPOINT)
The PINPOINT study started in June 2021, led by Dr Paul Henderson of the University of Edinburgh. The Registry is pleased to have worked with Dr Henderson and his team to support the delivery of this project. An abstract for PINPOINT was accepted for poster presentation at ECCO 2024.
The number of children newly diagnosed with inflammatory bowel disease (IBD) each year has been increasing worldwide. Some smaller regions of the United Kingdom (UK) have previously published their own incidence data for paediatric IBD. However, the last UK-wide incidence study was completed in 1999, therefore new data is urgently required. The PINPOINT study, led from Edinburgh and supported by Guts UK/BSPGHAN, recorded each new diagnosis of IBD in children under 16 years of age across the whole of the UK over a 18 months. Data entry was performed by uploading patient details to a secure platform (under the banner of the IBD Registry). The study will provide important information about the number of patients in each area of the UK, allowing the NHS and IBD charities to provide better care. This improvement in care will be driven by a better understanding of what resources are needed and how they can be used in a more beneficial way.
PINPOINT case study with Dr Paul Henderson
The IBD Registry is pleased to have worked with Dr Paul Henderson at the University of Edinburgh and his team to support delivery of the PINPOINT study. In this case study, Dr Henderson shares more information about PINPOINT and how working with the IBD Registry helped the study.
What is PINPOINT?
PINPOINT is a prospective paediatric IBD (PIBD) incidence study performed across all PIBD centres in 2021-2022. Our aim was to accurately (for the first time since 1999) determine the number of new IBD diagnoses in children under 16yrs of age in the UK. We also performed a prospective prevalence study across the entire UK in February 2023.
What are the benefits of PINPOINT for people with IBD?
Understanding the number of diagnoses in children per year has massive benefits to patients and their families. This data will help inform inpatient care, ensure that teams have the infrastructure to support patients (i.e. dietitians, nurse specialists, access to endoscopy etc), drive new aetiological hypotheses and inform patient groups and charities – highlighting areas of the country with a high incidence of PIBD.
The IBD Registry (IBDR) supported the delivery of PINPOINT. How were the team flexible and supportive during this process?
The IBDR team were phenomenal from the outset. They were great at troubleshooting problems, liaising directly with study sites, keeping track of data uploads and keeping me going during a long study.
In what ways has the IBD Registry provided innovative solutions to any challenges faced?
The IBDR designed the primary data collection tool (bespoke Excel file with macros) which made data collection feasible across so many sites. It also used online platforms to keep track of study involvement (e.g. Site Initiation Visits, site openings, data uploads) and used easy access digital platforms to help with secure data uploads at the end of the study.
A study like PINPOINT requires an expert and well-informed team. How did expertise from the IBD Registry team help in the delivery of the study?
The IBDR not only helped me understand the information governance around the PINPOINT study but also helped with local issues, consent for the study, GDPR and all aspects of data collection, even when not really in their remit. Without the IBDR, the study would have not met its primary outcome of identifying nearly 2,500 patients across the UK.