Useful resources developed by the CCB members, for both new cohorts embarking on data collection and established cohorts interested in collaboration with an introduction of the Central Data Repository and the eCRF.
The Central Data Repository (CDR) is a publicly accessible online database of clinical research studies targeting infectious diseases with epidemic or pandemic potential (IDEPP) in Europe. The CDR will be updated regularly to include new studies according to new global threats and European epidemiological scenarios.
Why was the CDR developed?
The CDR was launched under the EU-funded VERDI (GA-101045989) project, and further developed as part of the EU-funded CoMeCT (GA-101136531) and PIPELINE (GA-101155852) projects. It aims to streamline data sharing, foster collaboration, and prevent duplication in clinical research efforts targeting infectious diseases with epidemic or pandemic potential. The CDR provides key stakeholders and researchers with an overview of randomised clinical trials (RCTs), including adaptive platform trials (APTs), and cohort studies (CSs) ongoing or conducted since January 2022, focusing on IDEPP. This facilitates rapid identification and activation of suitable infrastructures and clinical sites, enhancing coordination of European research, and linking relevant initiatives and networks. By minimising redundant research efforts, the CDR accelerates scientific progress and optimises resource allocation, ultimately improving public health response.
What clinical research studies are included in the CDR?
The CDR includes CSs and RCTs (including APTs), carried out in Europe that focus on IDEPP, particularly those that may be considered emerging threats. Currently, mappings with periodic updates have been completed for studies analysing acute COVID-19 treatment (CSs), post COVID-19 condition (CSs, RCTs), mpox (CSs), avian influenza A(H5N1) (CSs, RCTs), respiratory syncitial virus infection (CSs), chikungunya virus disease (CSs), dengue (CSs), Zika virus disease (CSs), West Nile virus disease (CSs), chlamydia trachomatis infection (CSs) and neisseria gonorrhoeae infection (CSs). Outside of these systematic mappings, several additional studies have been submitted directly by investigators.
How is information collected for the CDR?
Studies are identified across several publicly available sources (PubMed, Scopus, ECRIN MDR, CTIS, ClinicalTrials.gov), and through direct contact with the Cohort Coordination Board members, the VERDI and COMECT scientific networks, and other relevant researchers. The screening of the studies is carried out applying an artificial intelligence (AI)-supported tool, supervised by infectious diseases specialists. Study metadata is provided by principal investigators and/or extracted from publicly available sources, employing a number of automated and semi-automated methods. The studies are all assigned applicable highly curated descriptors, enabling rapid and accurate browsing.
What information can be found in the CDR?
The CDR consists of three parts: interactive filters, a map of Europe showing the number of studies per country, and a browsable list of the studies. The map and the study list show the studies according to the selected filters. Each study in the CDR is detailed in a Study Identity Card, which includes the study’s name, design, number of participants, enrolment dates, location, population, setting, pathogen, disease, and biobanked samples. Whenever available, a link to the project website, study registration log and/or publication link is provided. The Cohort Coordination Board can be also contacted to support the linking of the researchers and initiatives.
After filtering or searching for relevant conditions or keywords, the user receives a list of clinical studies. Each study is named by its acronym, or if unavailable, the first author of the study.
Terms and conditions
The CDR is a platform constructed to provide an overview of the studies running in Europe. While the data is provided in good faith and to the best of our knowledge, neither UNIVR nor any VERDI/COMECT partners make any warranty, express or implied, including warranties of fitness for a particular purpose, or assume any legal liability or responsibility for the accuracy, completeness, or usefulness of any information provided (either isolated or in the aggregate), or represents that its use would not infringe privately owned rights.
The data is intended for Educational and Research purposes only. The term Educational Purposes means* (i) in the case of a Qualified Educational Institution, Faculty or Other Authorized Educational Licensees, purposes directly related to learning, teaching, and training, that are part of the instructional functions performed by a Qualified Educational Institution or Other Authorized Educational Licensee and (ii) in the case of an individual, purposes related to learning and training. “Educational Purposes” does not include research, commercial, professional, or any other for-profit purposes.
Get in touch
We are actively looking to collaborate with other initiatives working in this area, and we welcome you to contact us if you are interested in collaborating, including or amending data onto the CDR.
Within the EU-funded VERDI project, the CCB has been developing a core dataset of variables to be collected for MPX and STI cohorts. Similarly, a core set of variables will be provided also for all IDs with epidemic or pandemic potential, as defined within the CoMeCT project. This will allow researchers from all over the world to use standardised items when investigating specific ID conditions, with the overarching result of providing clearer, more reliable results. Included in this work is the elaboration of an eCRF, that will be publicly available and downloadable as an Excel file.
We are actively looking to collaborate with other initiatives working in this area, and we welcome you to contact us if you are interested in collaboration.
