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.
CDR is COMING SOON!
When ready the link to the CDR will appear at the bottom of this page.
The Central Data Repository (CDR) is a publicly accessible online database of clinical research studies running in Europe. The CDR will be updated regularly to include studies that analyse sexually transmitted infections (STIs) and infectious diseases with epidemic or pandemic potential.
Why was the CDR developed?
The CDR was developed as part of the EU-funded VERDI (GA-101045989) and CoMeCT (GA-101136531) projects to facilitate data sharing, foster collaboration and prevent duplication of research efforts. It offers key stakeholders and researchers an overview of ongoing clinical research in infectious diseases, enabling rapid study activation for emerging threats or public health emergencies of international concern as well as the possibility of linking with relevant initiatives and networks.
What clinical research studies are included in the CDR?
The CDR includes ongoing or recently closed (after 01.01.2022) cohort studies, randomised clinical trials, including adaptive platform trials, carried out in Europe and targeting infectious diseases with epidemic and pandemic potential and STIs. It currently includes metadata of observational and interventional studies that analyse COVID-19, mpox, and avian influenza A (H5N1).
How is information collected for the CDR?
Clinical studies targeting STIs and infectious diseases with epidemic and pandemic potential carried out in Europe after 01.01.2022 are identified across several publicly available sources (PubMed, ECRIN, ClinicalTrials.gov), and via directly contacting relevant researchers. The screening of the studies is carried out in an AI-supported by manually supervised manner. Study metadata is provided by principal investigators or extracted from publicly available sources, employing a number of automated and semi-automated methods. In any case, the studies are assigned all applicable highly curated Descriptors enabling rapid and accurate browsing.
How does the CDR work?
Study information can be found through keyword searches, filters, or the interactive map. It is also presented in tables and graphics. Each study is described with a set of Descriptors, about Study Type, Population, Setting, Intervention, and biobanked samples. The record also contains the study type, enrolment dates, number of participants, links to other resources, maximal conducted follow-up, and description of the aim.
What information about clinical research studies can be found in the CDR?
The CDR consists of three parts: interactive filters, choropleth map of Europe showing how many studies were found for each country, and the browsable list of the studies. The visualisation and the study list show the studies answering the specified filters. Detailed information on each study can be viewed on the Study Identity Card which includes the study’s name, design, number of participants, enrolment dates, location(s), population, setting, pathogen, disease, and bio-samples.
Future development
We are working to incorporate data on pathogens with epidemic or pandemic potential, including Neisseria gonorrhoeae, Chlamydia spp., Treponema pallidum (Syphilis), and influenza-like illnesses, into the CDR. In the subsequent phase of this initiative, we aim to catalog and align the variables from these studies, enabling seamless identification of compatible datasets.
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.
