Collaborations with international projects
unCoVer (‘Unravelling Data for Rapid Evidence-Based Response to COVID-19’) is a functional network of 29 partners capable of harvesting real-world data derived from the response and provision of care to COVID-19 patients by health systems across Europe and internationally. These real world data comprise mostly information from electronic medical records from front line hospitals, as well as national surveillance data, registries, and integrate information from over 300,000 COVID-19 patients initially, and anticipated to increase as databases are being updated on a continuous basis. Studies into patient’s characteristics, determinants of diseases prognosis, and safety and effectiveness of treatments and potential strategies against COVID-19 in real world settings, are envisioned to complement findings from efficacy/safety clinical trials where vulnerable populations, those most at risk of severe COVID-19, are often excluded. unCoVer’s ultimate goal is to bring together European and international expertise to monitor, identify, and facilitate the access and utilization of this type of data, identifying knowledge gaps, and underrepresented populations, and proactively seek synergies with complementary existing and planned clinical databases.
SYNCHROS (SYNergies for Cohorts in Health: integrating the Role of all Stakeholders) is a three-year, Horizon 2020, Coordination and Support Action (CSA) funded by the EU Framework Programme for Research and Innovation. The objective of SYNCHROS is to create a sustainable European strategy for the development of a next generation of integrated cohorts population, patient and clinical trial cohorts. Europe is extremely well served by a rich variety of population, patient and clinical trial cohorts. However, the enormous potential benefits of their rich information have not been optimally exploited. Through intensive stakeholder involvement (researchers, funding bodies, clinicians, coordinators of previous harmonization and integration exercises), SYNCHROS will meet the need for an international strategic agenda for enhanced coordination and collaboration of cohorts globally. SYNCHROS will address the practical, ethical and legal, and the methodological challenges to optimising the exploitation of current and future cohort data, map the cohort landscape in Europe and large international initiatives, identify the best methods for integrating cohort data, identify solutions for addressing practical, ethical and legal challenges in integrating data across patient, clinical trial and population cohorts, and evaluate the use of emerging and new data collection technologies and types of data. Finally, SYNCHROS will make sustainable recommendations on standards to improve future sample, data collection and data sharing methods and disseminate this information so as to contribute to defining an international strategic agenda for better coordination of cohorts in Europe and beyond.
Acknowledgements for the contribution of commercial companies
QualityMetric (QM), a clinical outcomes assessments solutions provider and scientific consultancy specialising in patient-reported outcomes provides ORCHESTRA with SF-36v2 PRO Survey. How do subsequent public health responses may affect the well-being of the patients? Which therapeutic measures are appropriate? QualityMetric’s SF-36v2 PRO Survey will enable to find answers to these questions and add to existing knowledge on the course of the disease, its long-term health implications and the likelihood of patient reinfection.
The survey will be used, together with other tools, to quantify the impact of the disease’s spectrum of symptoms on the functional health and well-being of affected patients from their own point of view. Additionally, development is in progress to produce country specific preference weights for the SF-6Dv2, a health state utility index scored from the SF-36v2, which will support future efforts to evaluate the cost effectiveness of healthcare interventions of SARS-CoV2.
Please find QM’s press release here: