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P179 The acceptability and utility of United Registries for Clinical Assessment and Research (UR-CARE) database to improve clinical care in a single centre setting

V.A. Fenech1, N. Kamperidis1, T. Tyrrell1, L. Dyall1, R. Misra1, S. Barber2, S. Randall3, N. Arebi1

1St Mark’s Hospital, Department of Gastroenterology, London, UK, 2National Institute for Health Research, Applied Research Collaborations, London, UK, 3Patient Information Forum, Head of Strategy and Partnership, London, UK

Background

The United Registries for Clinical Assessment and Research (UR-CARE) is a validated pan-European database developed by the European Crohn’s and Colitis Organisation (ECCO) to support clinical practice for patients with inflammatory bowel disease (IBD). ECCO has published guidelines to reduce variation in care. We examined the value of UR-CARE database to improve care in a cohort of newly-diagnosed IBD patients.

Methods

All patients with a new diagnosis of IBD within 6 months attended a New Diagnosis Clinic (NDC). Prior to registering patients, the purpose of UR-CARE database was explained. Patients who consented to have their clinical data added to the database signed a consent form. Mandatory fields and additional data that reflected quality of care were inputted. Descriptive statistics summarised the findings. The association between consent and disease activity or gender was examined using a chi-square test and for age using a two-sample t-test.

Results

Twenty-five out of 29 newly diagnosed patients consented for data inclusion in UR-CARE (13 males). Median age was 44 (range 18–77). Fourteen had ulcerative colitis (UC), 8 had Crohn’s disease (CD) and 3 had unclassified IBD. 8.3% reported extra-intestinal manifestations within 6 months of diagnosis. 17/25 patients had active disease. The patients that did not consent consisted of 2 males, 3/4 had active disease and mean age was 44.4 (SD 16.1) compared with 36.3 (SD 19.4) consenters.

Through the database we noted that not all mandatory diagnostic tests were requested at the time of hospital visit: 4/14 UC patients did not have a full colonoscopy and 3/8 CD patients lacked a small bowel imaging or capsule endoscopy. Only 4 out of 14 UC patients and 2 out of 8 CD patients were prescribed steroids within 6 months of their diagnosis. The 7 patients with missing investigations were identified and tests subsequently booked in line with guidelines. There was no association between consent and disease activity (p = 0.78), gender (p = 0.94) and age (p = 0.37).

Conclusion

In newly diagnosed IBD cohort, most patients consented to inclusion in UR-CARE database. There were no contributing factors associated with patient consent. The easily accessible visualisation of our data detected incomplete diagnostic tests and initiated actions to improve care early on in the disease course. UR-CARE offers potential to deliver high quality IBD care by aligning practice against ECCO guidelines. Attention to data-sharing legal and administrative barriers offers a promise for large scale studies and foster collaborative research networks.

Figure 1.