Validation of the ‘United Registries for Clinical Assessment and Research’ [UR-CARE], a European Online Registry for Clinical Care and Research in Inflammatory Bowel Disease

Burisch, Johan; Gisbert, Javier P.; Siegmund, Britta; Bettenworth, Dominik; Thomsen, Sandra Bohn; Cleynen, Isabelle; Cremer, Anneline; Ding, Nik Sheng; Furfaro, Federica; Galanopoulos, Michail; Grunert, Philip; Hanžel, Jurij; Ivanovski, Tamara Knezevic; Krustiņš, Eduards; Noor, Nurulamin M; O'Morain, Neil; Rodríguez‐Lago, Iago; Scharl, Michael; Tua, Julia; Uzzan, Mathieu; Yassin, Nuha; Baert, Filip; Langholz, Ebbe

doi:10.1093/ecco-jcc/jjy015

Cited by 9 publications

(3 citation statements)

References 11 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Montreal classification, lines of treatments and dates of and reasons for starting and stopping). 6 Ethical approval for collecting data prospectively and ensuing retrospective analysis was obtained at all participating institutions.…”

Section: Methodsmentioning

confidence: 99%

Quality outcome measures project in IBD: a proof-of-concept benchmarking study in three Belgian IBD units

Baert,

Pouillon

et al. 2024

AGEB

View full text Add to dashboard Cite

Introduction: Current treatment modalities in IBD allow us to render normal quality of life to most patients. Ideally, structured digital care pathways can be harmonised in order to measure (semi-) automatically key outcome quality indicators and compare between institutions. Materials and methods: Key quality criteria were selected through a consensus process and aligned with the ICHOM quality criteria in IBD, including clinical parameters, PROMs, quality of life, health care utilisation and productivity. Results: Measurements of the 11 selected key quality criteria were integrated in the structured care pathways of three IBD units. All patients received (at least) twice a year three questionnaires (PRO2 or SCCAI, ICHOM criteria and IBD Disk) through the electronic application to collect necessary information ahead of their planned outpatient clinic. In addition, interpretation of biomarkers was automated, and more difficult outcome indicators were manually added by the caregiver during the visit in anticipation of adaptations to or improvements of the electronic record. All information was collected centrally electronically in a structured way allowing benchmarking between the three centres, and stored for future retrospective research. Conclusion: A (partially) automated benchmarking for measuring quality of care is feasible. It provides an objective assessment of IBD care, enables benchmarking between centres and facilitates quality improvements projects.

show abstract

Section: Methodsmentioning

confidence: 99%

Quality outcome measures project in IBD: a proof-of-concept benchmarking study in three Belgian IBD units

Baert,

Pouillon

et al. 2024

AGEB

View full text Add to dashboard Cite

show abstract

“…The UR-CARE Registry is a validated platform for the prospective collection of clinical data developed and supported by the ECCO [5]. The UR-CARE Registry collects patient data, such as disease demographics, disease activity, disease complications, and treatment.…”

Section: Data Sourcementioning

confidence: 99%

Biological treatment approach to inflammatory bowel disease is similar in academic and nonacademic centres – prime time for decentralisation of inflammatory bowel disease care?

Tepeš,

Hanžel,

Štubljar

et al. 2024

European Journal of Gastroenterology &Amp; Hepatology

View full text Add to dashboard Cite

Background With the increasing number of inflammatory bowel disease (IBD) patients, it is difficult to manage them within specialised IBD teams in academic medical centres: many are therefore treated in nonacademic IBD centres. It is unclear whether the time to introducing biologics is the same in both settings. Aim We aimed to compare treatment approach with biologics in academic vs. nonacademic centres. Methods We analysed Slovenian national IBD registry data (UR-CARE Registry, supported by the European Crohn’s and Colitis Organisation), which included 2 academic (2319 patients) and 4 nonacademic IBD (429 patients) centres. Results The disease phenotype was similar in both settings. In total, 1687 patients received 2782 treatment episodes with biologics. We observed no differences in treatment episodes with TNF-alpha inhibitors (60% vs. 61%), vedolizumab (24% vs. 23%), or ustekinumab (17% vs. 16%) in academic compared to nonacademic centres (P = 0.949). However, TNF inhibitors were less often the first biologic in academic centres (TNF inhibitors: 67.5% vs. 74.0%, vedolizumab: 20.3% vs. 17.9%, ustekinumab: 12.1% vs. 8.1%; P = 0.0096). Consequently, more patients received ustekinumab (29.8% vs. 18.3%) and vedolizumab (17.4% vs. 13.5%) and fewer TNF inhibitors (52.7% vs. 68.2%) for Crohn’s disease in academic compared to nonacademic centres, with no such differences for ulcerative colitis. The time to initiation of the first biologic from diagnosis was short and similar in both settings (11.3 vs. 10.4 months, P = 0.2). Conclusion In this nationwide registry analysis, we observed that biological treatment choice was similar in academic and nonacademic settings. These findings support the decentralisation of IBD care.

show abstract

“…However, few studies have investigated the COVID-19-related fears experienced by patients with GI diseases. 8 , 9 In IBD, specifically in its 2 main subtypes Crohn’s disease (CD) and ulcerative colitis (UC), anxiety and depression have been frequently reported due in part to the disease burden and the side effects of its treatments regardless of the disease activity. 7 , 10 In addition, anxiety and depression can be exacerbated by the added stress posed by the virus’ potentially lethal risks, particularly when the additional risk posed by using immunomodulatory medications was initially unknown.…”

Section: Introductionmentioning

confidence: 99%

Fear of COVID-19 Among Patients with Inflammatory Bowel Disease as Compared to Patients with Other Gastrointestinal Conditions

Lo¹,

Acosta²,

Bernstein³

et al. 2022

Turk J Gastroenterol

Self Cite

View full text Add to dashboard Cite

Background: Although several studies have reported the impact of fears relating to coronavirus-19 on several chronic illnesses, there are few studies focused on gastrointestinal conditions. Therefore, the aim of this study was to compare the fear of coronavirus-19 in patients with inflammatory bowel disease to other gastrointestinal conditions and how the fear of COVID-19 manifests across different demographical backgrounds among inflammatory bowel disease respondents. Methods: Participants with gastrointestinal conditions (age ≥ 18) were recruited from 27 countries. Demographic, clinical, and psychosocial information was collected. An adapted scale for inflammatory bowel disease patients measuring the fear of coronavirus-19 and gastrointestinal-specific fear of coronavirus-19 was used. Results: In 831 participants (312 inflammatory bowel disease), only significant increases in gastrointestinal–fear of coronavirus-19 were found in between inflammatory bowel disease and other gastrointestinal conditions (mean [standard deviation]: 13.5 [5.5] vs 10.9 [5.0], P < .01). Among inflammatory bowel disease respondents, persons on sick leave had significantly more fear of coronavirus-19 than those employed (median [IQR], 31.0 [28.5-39.5] vs 26.0 [20.0-33.0], P = .035) and significantly more gastrointestinal–fear of coronavirus-19 compared to the employed (18.0 [14.5-22.0] vs 13.0 [9.0-17.0], P = .033) or respondents outside of the labor market (12.0 [7.0-16.0], P = .022). Persons living in a rural setting had significantly more fear of coronavirus-19 compared to persons living in regional setting (29.5 [22.0-37.8] vs 25.0 [20.0-31.3], P = .007) and gastrointestinal–fear of coronavirus-19 (15.0 [11.0-19.8] vs 12.0 [9.0-16.0], P = .02). Conclusion: Respondents with inflammatory bowel disease are more afraid of coronavirus-19 regarding their disease; especially, persons on sick leave or persons living in a rural setting. This should be taken into consideration to personalize the support that health care providers can offer in mitigating fear related to coronavirus-19.

show abstract

Validation of the ‘United Registries for Clinical Assessment and Research’ [UR-CARE], a European Online Registry for Clinical Care and Research in Inflammatory Bowel Disease

Abstract: The UR-CARE database appears to be feasible, valid and reliable as a tool and easy to use regardless of prior user experience and level of clinical IBD experience. UR-CARE has the potential to enhance future European collaborations regarding clinical research in IBD.

Cited by 9 publications

References 11 publications

Quality outcome measures project in IBD: a proof-of-concept benchmarking study in three Belgian IBD units

Quality outcome measures project in IBD: a proof-of-concept benchmarking study in three Belgian IBD units

Biological treatment approach to inflammatory bowel disease is similar in academic and nonacademic centres – prime time for decentralisation of inflammatory bowel disease care?

Fear of COVID-19 Among Patients with Inflammatory Bowel Disease as Compared to Patients with Other Gastrointestinal Conditions

Contact Info

Product

Resources

About