The UR-CARE registry has been validated and is ready for use
Johan Burisch, Y-ECCO Member
 Johan Burisch © ECCO |
The “United Registries for Clinical Assessment and Research” (UR-CARE) database is an IBDIM (IBD in Motion, the research unit of ECCO) initiative to facilitate daily patient care and research studies in IBD in centres and/or research groups across Europe. The UR-CARE database [1] offers comprehensive data collection, including data on disease characteristics, diagnostic procedures (such as endoscopy or imaging), medical and surgical treatments, and laboratory tests. Several databases developed for use in IBD already exist, but usually these have been implemented in clinical practice or research studies without validation.
As UR-CARE is intended for use in various European countries, many with different cultures and languages, and by individuals with different levels of experience with IBD, it was realised that validation of the database would be needed in order to ensure homogeneity, validity, and reproducibility of data capture.
The Young ECCO Committee (Y-ECCO) was tasked with overseeing this validation process, the results of which were recently published in the Journal of Crohn’s and Colitis [2]. Together with 14 Y-ECCO Members, the Committee entered five predefined case histories based on actual patient cases into UR-CARE. All cases included several key items and the proportion of correctly entered items was compared to an a priori defined minimum proportion that was deemed to be satisfactory. This process was repeated after 6 weeks in order to assess the retest reliability. We found that all participants were able to identify the relevant information and to transfer it into the correct scheme in UR-CARE with at least 90% validity (Figure 1) regardless of geographical region of the participant, age or level of clinical IBD experience. These results are particularly encouraging bearing in mind that the participating Y-ECCO Members lacked prior experience with UR-CARE and that UR-CARE is intended to be used across Europe by users who are expected to be heterogeneous in terms of culture, health care system and experience in IBD and who will comprise both physicians and non-physicians (i.e. scientists, nurses, database managers).
More information regarding UR-CARE and how to join the database can be found here: www.ecco-ibd.eu/science/ur-care.html
References
- European Crohn’s and Colitis Organisation [ECCO]. United Registries for Clinical Assessment and Research. 2017. Available at: https://www.ecco-ibd.eu/index.php/science/ur-care.html [Accessed December 11, 2017].
- Burisch J, Gisbert JP, Siegmund B, et al. 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. J Crohns Colitis 2018. Feb 3. doi: 10.1093/ecco-jcc/jjy015. [Epub ahead of print].
Validation of the “United Registries for Clinical Assessment and Research” (UR-CARE), a European online registry for clinical care and research in IBD - Read the full article in JCC