END-COVID - European respiratory Network for Data-sharing in COVID19
- Prof. Stefano Aliberti (University of Milan, Italy)
- Dr Claudia Valenzuela (University of Madrid, Spain)
Since the start of the COVID-19 pandemic, numerous COVID-19 research initiatives have been launched. To date, these strategies have primarily focussed on the acute infection and not the long-term consequences. The ambition of the CRC END-COVID is to study the consequences of COVID-19 infection, particularly in those who have been hospitalised. To maximise the impact of the effort invested in clinical data collection and research and to minimise duplication of work and offer better and faster answers to medical needs, END-COVID aims to align and, where possible, merge different national initiatives in Europe studying the long-term effects of COVID-19 in those post-hospitalisation survivors. END-COVID will study the impact on those with premorbid lung conditions and the onset of de novo lung disease and co-morbidities. The long-term vision of the END-COVID CRC is to build an integration platform that would allow any researcher to have access to the data to answer COVID-19 related research questions, once approved by END-COVID CRC Steering Committee and Data Controllers.
The specific aims of the END-COVID CRC during its 2-year time frame are as follows:
- To establish a consensus among patients and physicians on the optimal post-hospitalisation follow up to be provided to COVID-19 patients.
- To build a network of researchers and clinical experts to guide future clinical and research priorities for the ERS community around COVID-19.
- To provide guidance on the minimal requirement for data collection linked to the respiratory component of COVID-19 patients to ensure easy integration of the collected data.
- To provide support to countries where data collection has not been started. The data collection system would combine with a common minimal data set along with specific modules to collect data at different time-points post-COVID-19 infection. In these modules, it will also be possible to indicate whether sample collection and storage has been performed and whether it would be possible to call back post-COVID-19 patients for research purposes.
- To characterise the impact of COVID-19 infection on patients with chronic lung disease through systematic data collection.
- To facilitate applications to major funders e.g. big donors or European Union funding sources to support the END-COVID CRC.
- To prepare the respiratory community for a 2nd wave outbreak so that effective and harmonised clinical response is possible and more acute data can be collected prospectively at that moment.
- To liaise with other similar initiatives in and outside Europe as well as in other medical fields, e.g. cardiology, thoracic surgery, medical oncology, etc.
The END-COVID CRC Steering Committee will include representatives from various assemblies, including among others: ’Infectious disease’, ’Airway diseases’, ’Interstitial Lung Diseases’, ’Intensive care’, ’Rehabilitation’ and ’Thoracic Oncology’ as well as a representative of the ERS Core Management Group.
The larger management team will include various key stakeholders:
- The disease specialist will have to define their disease-specific needs.
- National leads will coordinate the activities at a national level.
- Data specialists will provide solutions to the technical difficulties linked to the data collection as well as the integration of different data sets.
- Patient engagement will allow the integration of patient-reported outcomes but will also ensure alignment of the research project to their needs.
- Industry partners will contribute to the definition of research objectives.
- Guidelines developers will investigate in real-time when evidence is sufficient to publish clinical recommendations. This will be done through the ‘COVID-19 rapid response task force’.
- ERS leadership will be involved to ensure that the project fits with the mission and vision of the society.
If you are interested in more information about END-COVID CRC or would like to join the network, please contact firstname.lastname@example.org.