Health-RI plans to publish several best practices for data sharing policies and templates that can be used as a starter kit for new COVID-19 studies that want to make their data available to other researchers. Download a first draft of a guide to data governance in COVID-19 studies (in Dutch)
Also, be sure to make use of the standard data and material transfer agreement templates recently approved by all UMC’s and available for download via the ELSI servicedesk.
If you want to collect clinical data, the WHO case record forms should be used. The March 23rd 2020 NOVEL CORONAVIRUS (COVID-19) - RAPID VERSION can be downloaded here. Castor has made these forms available in xml format, ready to use in any research data capture system of your choice. If needed, the iCRF generator can be used for conversion. An inventory of Case Record Forms (CRFs) & phenotyping standards for COVID-19 can be found here.
Health-RI is working together with the NFU to create a central FAIR repository of clinical COVID-19 data from all the UMC’s, initially from CRF’s and in the long run from EPD’s.
Furthermore, VODAN, AmsterdamUMC (CovidPredict), RadboudUMC, and Health-RI are working on creating a semantic data model and code book to make data created with the WHO COVID-19 case record forms interoperable, as well as further expanding them with domain specific parameters (e.g. CORAD scores for radiology).The latest version of this model can be found in BioPortal or Github.
Another initiative to make COVID-data interoperable
The European Health Data and Evidence Network EHDEN has launched a COVID-19 Rapid Collaboration Call to map COVID data to the OHDSI OMOP Common Data Model. Initial work can be found at github OHDSI COVID landing page.
If you have any questions, please do not hesitate to ask Health-RI.