Harmonization and standardization of data for a pan-European cohort on SARS- CoV-2 pandemic

Rinaldi, Eugenia; Stellmach, Caroline; Rajkumar, Naveen Moses Raj; Caroccia, Natascia; Dellacasa, Chiara Maria; Giannella, Maddalena; Guedes, Mariana; Mirandola, Massimo; Scipione, Gabriella; Tacconelli, Evelina; Thun, Sylvia

doi:10.1038/s41746-022-00620-x

Cited by 19 publications

(15 citation statements)

References 52 publications

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“…Thirdy, the actual implementation of the extension modules should be part of follow-up infrastructure projects to supply funding and resources for filling the dataset definition with actual data. For the GECCO dataset, this is ensured by follow-up projects of the German COVID-19 Research Network of University Medicine ("Netzwerk Universitätsmedizin"), such as CODEX+, which includes several implementation tasks that are actively using the GECCO dataset items [39] and further projects [40][41][42][43]. Fourth, once the dataset definitions are implemented and leveraged in use cases, additional demands to the dataset are likely raised or issues with existing definitions are revealed.…”

Section: Discussionmentioning

confidence: 99%

Development of interoperable, domain-specific extensions for the German Corona Consensus (GECCO) COVID-19 research dataset using an interdisciplinary, consensus-based workflow

Lichtner

Haese

Brose

et al. 2022

Preprint

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BackgroundThe COVID-19 pandemic has spurred large-scale, inter-institutional research efforts. To enable these efforts, the German Corona Consensus (GECCO) dataset has been developed previously as a harmonized, interoperable collection of the most relevant data elements for COVID-19-related patient research. As GECCO has been developed as a compact core dataset across all medical fields, the focused research within particular medical domains demanded the definition of extension modules that include those data elements that are most relevant to the research performed in these individual medical specialties.Main bodyWe created GECCO extension modules for the immunization, pediatrics, and cardiology domains with respect to the pandemic requests. The data elements included in each of these modules were selected in a consensus-based process by working groups of medical experts from the respective specialty to ensure that the contents are aligned with the research needs of the specialty. The selected data elements were mapped to international standardized vocabularies and data exchange specifications were created using HL7 FHIR profiles on the appropriate resources. All steps were performed in close interdisciplinary collaboration between medical domain experts, medical information scientists and FHIR developers. The profiles and vocabulary mappings were syntactically and semantically validated in a two-stage process. In that way, we defined dataset specifications for a total number of 23 (immunization), 59 (pediatrics), and 50 (cardiology) data elements that augment the GECCO core dataset. We created and published implementation guides and example implementations as well as dataset annotations for each extension module.ConclusionsWe here present extension modules for the GECCO core dataset that contain data elements most relevant to COVID-19-related patient research in immunization, pediatrics and cardiology. These extension modules were defined in an interdisciplinary, iterative, consensus-based approach that may serve as a blueprint for the development of further dataset definitions and GECCO extension modules. The here developed GECCO extension modules provide a standardized and harmonized definition of specialty-related datasets that can help to enable inter-institutional and cross-country COVID-19 research in these specialties.

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Section: Discussionmentioning

confidence: 99%

Development of interoperable, domain-specific extensions for the German Corona Consensus (GECCO) COVID-19 research dataset using an interdisciplinary, consensus-based workflow

Lichtner

Haese

Brose

et al. 2022

Preprint

Self Cite

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“…Therefore, new concepts have been submitted to the most pertinent standard organisations to reinforce future global exchange of data and build a model to increase comparability of data in preparedness plans. 37 …”

Section: Cases In Point – Experiences From Selected Eu Projectsmentioning

confidence: 99%

Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response

Tacconelli

Górska

Carrara

et al. 2022

The Lancet Regional Health - Europe

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“…web applications for real-time recording of symptoms especially in self-isolating patients) can be utilized for a more detailed assessment of clinical questions. A new pan-European project named Connecting European Cohorts to Increase Common and Effective Response to SARS-CoV-2 Pandemic (ORCHESTRA) has been established on similar principles to rapidly advance the knowledge of the effects and treatment of COVID-19 [ 45 ]. Similarly, collaboration with existing platforms specifically designed in anticipation of a pandemic can be established in collecting timely, detailed and well-harmonized data for kidney patients.…”

Section: Recommendationsmentioning

confidence: 99%

Preparing European Nephrology for the next pandemic: lessons from the ERACODA collaboration

Vart

Duivenvoorden

Franssen

et al. 2022

Nephrology Dialysis Transplantation

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Owing to the vulnerability of patients with chronic kidney disease to infectious diseases, the coronavirus disease 2019 (COVID-19) pandemic has been particularly devastating for the nephrology community. Unfortunately, the possibility of future COVID-19 waves or outbreaks of other infectious diseases with pandemic potential cannot be ruled out. The nephrology community made tremendous efforts to contain the consequences of the COVID-19 pandemic. Despite this, the COVID-19 pandemic has highlighted several shortcomings in our response to the pandemic and has taught us important lessons that can be utilized to improve our preparedness for any future health crises of similar nature. In this article we draw lessons from the European Renal Association COVID-19 Database (ERACODA) project, a pan-European collaboration initiated in March 2020 to understand the prognosis of COVID-19 in patients on kidney function replacement therapy. We discuss challenges faced in generating timely and robust evidence for informed management of patients with kidney disease and give recommendations for our preparedness for the next pandemic in Europe. Limited collaboration, the absence of common data architecture, and the sub-optimal quality of available data posed challenges in our response to COVID-19. Aligning different research initiatives, strengthening electronic health records, and involving experts in study design and data analysis will be important in our response to the next pandemic. The European Renal Association may take a leading role in aligning research initiatives via its engagement with other scientific societies, national registries, administrators, and researchers.

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Harmonization and standardization of data for a pan-European cohort on SARS- CoV-2 pandemic

Cited by 19 publications

References 52 publications

Development of interoperable, domain-specific extensions for the German Corona Consensus (GECCO) COVID-19 research dataset using an interdisciplinary, consensus-based workflow

Development of interoperable, domain-specific extensions for the German Corona Consensus (GECCO) COVID-19 research dataset using an interdisciplinary, consensus-based workflow

Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response

Preparing European Nephrology for the next pandemic: lessons from the ERACODA collaboration

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