Enhancing collaboration with existing databases (including UR-CARE)

Well-designed electronic national databases and registries are recognised for providing a real-world view of clinical practice, patient outcomes, safety and comparative effectiveness. Several national studies have been invaluable to our understanding of IBD. For instance, the EpiCom inception cohort study (now Epi-IBD) captured data on outcomes of IBD across several European countries, a perspective that other national databases were unable to capture [1]. It is against this background and with the intention of enhancing collaborative networks across Europe that ECCO took the bold and forward-thinking step of creating the UR-CARE database, to bring a wealth of information under one umbrella.

At an individual level, collaboration is driven by researchers brought together informally through a shared research goal. Access to a searchable catalogue of the databases including types of datasets and contact details (much like the online genetic catalogues) would facilitate this collaborative route.

At an organisational level, building a network and infrastructure for sustained collaborations is likely to promote longer-lasting research studies. Much can be learned from other disciplines with already established processes and policies. A notable example comes from the Global Alliance for Genomics and Health, which covers sharing of genomic, clinical, epidemiological and lifestyle data and transcends technical, ethical, legal and security barriers across countries [2]. The breadth of registries across Europe was described in a recent EpiCom survey, highlighting the potential to link disease-specific databases such as IBD with national registries with the right infrastructure and networks [3]. Such an undertaking would require standardisation of data fields within databases, giving options for basic and advanced fields to generate a larger pool of analysable data. As an international body, ECCO is well placed to undertake a review of databases to define standards, thereby reducing barriers to research attributed to different datasets. 

Ensuring the availability and compatibility of data in databases is but a first step to collaboration.  Whilst the UR-CARE database has been validated and recognised for its powerful potential to enhance European collaborations, there remains a large gap in achieving its potential by wider adoption [4]. A clear direction of travel with research priorities for database-driven studies may stimulate new collaborative efforts. For instance in the case of colorectal cancer, efforts to guide researchers into studies likely to impact outcomes within the next 5 years have been presented through a consensus process that identified topical research gaps to be addressed by workgroups, setting the foundation for collaborative studies [5].

There are several approaches and tested methods that can be adopted for the development of collaborative networks. Short of that, less sophisticated methods such as coming together of interested parties may work as well. However, given the increasing constraints on resources and funding, having a vision for a future research agenda may have a greater impact. A study to explore research gaps that may be addressed through database-driven research is the next step to facilitate collaborative networks. There is much promise for collaborative networks using old, new and upcoming databases. The IBD scientific community needs to respond to these opportunities and adopt a proactive role in motivating and inspiring researchers into action.

References

1. Burisch J, Pedersen N, Čuković-Čavka S, et al. East-West gradient in the incidence of inflammatory bowel disease in Europe: the ECCO-EpiCom inception cohort. Gut. 2014;63:588–97.
2. Global Alliance for Genomics and Health. Enabling genomic data sharing for the benefit of human health. https://www.ga4gh.org/
3. Gordon H, Lanholz E. The EpiCom survey-registries across Europe, epidemiological research and beyond. J Crohns Colitis. 2017;11:1019–21.
4. 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;12:532–7.
5. Lawler M, Alsina D, Adams RA, et al. Critical research gaps and recommendations to inform research prioritisation for more effective prevention and improved outcomes in colorectal cancer. Gut. 2018;67:179–93.