ORCHESTRA is interested in working with European and international projects. Click here for more information. Below you find our current ongoing collaborations.
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.
ReCoDID (Reconciliation of Cohort data in Infectious Diseases), is a four-year project supported by the European Commission under the Horizon 2020 Programme and by the Canadian Institutes of Health Research Institute of Genetics (CIHR-IG). The consortium brings together a multidisciplinary team from four continents to fast track the research response to viruses and other pathogens by facilitating data and sample sharing between infectious disease cohort studies.
Objectives:
- Identify and address the political, ethical, administrative, regulatory, and legal (PEARL) barriers and solutions related to combining, analyzing and sharing a range of datatypes and specimens across infectious disease cohorts.
- Develop and implement a roadmap, tools and analytical methods to reconcile, analyze and link human clinical, epidemiological, and diagnostic laboratory data within and across infectious disease cohorts.
- Develop and implement a roadmap, tools and analytic methods to reconcile, analyse and link « high density laboratory » data with synthesized clinical-epidemiological metadata from objective 2.
- Develop a local governance model and searchable portal for decentralized cataloguing of data repositories and biobanks.
ReCoDID builds on existing infrastructures and partnerships to develop a sustainable model for the storage, curation, and analyses of the complex data sets collected by infectious disease (ID)-related cohorts. While ID cohorts collect both clinical-epidemiological and terabytes of OMICS data, storage and analysis of CE and high dimensional laboratory data remains separate and developing the infrastructure for housing and analyzing high dimensional laboratory data is generally not feasible for individual studies.
ReCoDID | Reconciliation of Cohort data in Infectious Diseases
The European Patient Safety Foundation (EUPSF) is an independent, public interest foundation. It constitutes a neutral knowledge and best practices exchange platform for innovative, meaningful, sustainable and replicable solutions for Patient Safety improvement.
The EUPSF is a multi-speciality oriented group believing that a significant improvement in patient safety is possible only by empowering patients and healthcare professionals through people-driven, collaborative, sustainable approaches.
Its mission is not only to empower people for patient safety but also to develop innovative, meaningful, sustainable and replicable patient safety projects; to create a European multidisciplinary platform for exchanging knowledge and best practices; finally, to promote and stimulate the application of best practices that lead to long-lasting changes in safety culture in healthcare.
The group participates in the activity of the ORCHESTRA project – not only as a stakeholder but also as member of the COVID-19 Global Guidance Group (CGGG), which is an external panel of experts that evaluates and provides feedback on the scientific production of the whole Consortium.
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: