REDCap (Research Electronic Data Capture) is used as the choice of Data-Entry-System of choice. REDCap consists of a powerful API (Application Programming Interface) that allows it to implement functionality outside of REDCap where REDCap reaches its limitations.
The REDCap installation is configured on a server in the computer center of the University Medical Center Freiburg. The server runs within the so-called Secure Server Network, which makes it available from the Internet. It is protected with a firewall. Data transfer is protected using SSL and HCPs can access the system via a web browser.
- The Freiburg development team is creating a simple, first version of the registry database, including no or only minimal real data items. This sample database doesn’t contain yet real patient data (only demo information). The first goal is to give all partners a better understanding of the look and feel of the system. The second goal is to set up a functional system that ensures a running and stable installation of REDCap.
- A “pilot” registry system was set up to be used by all partners. It gives the possibility to enter demo data and gives a first impression on how the system will work in the end.
- The system can now also be used to start developing data-exchange and interoperability functionalities.
A “codebook” (a list of all items in the database) is generated as a quick reference for viewing data collected by the registry as well as the relevant meta-data (variables types, data-ranges, limits, required fields). The idea of the codebook is that it should contain all information relevant to set up the data in REDCap and information relevant for generating RDF data (e.g. links to ontologies for all data items).
- The Codebook used is similar to the one created for the Vascular Anomalies registry (VASCA).
- It is currently under development and contains the set of Common Data Elements (CDEs) as well as the Disease Specific Common Data Elements (DCDEs).
- The current codebook can be viewed upon request by contacting Nawel van Lin (please note that the codebook is not complete and subject to change).
Technical support through mini-Hackathons
To facilitate a hands-on collaboration between the Freiburg development team and FAIR Data Stewards involved with the FAIRification process of EURO-NMD, mini-Hackathons are being organised. The first took place on 29th January 2021. The objective was to bring in the expertise of Rajaram Kaliyaperumal, a Software Developer from Leiden University Medical Center, to demonstrate how to transfer REDCap data into RDFs. It was an opportunity for Adrian Tassoni and his technical team to ask any questions related to the FAIRification process through the use of REDCap. During this mini-Hackathon, Rajaram demonstrated how to generate RDF data workflow with REDCap and provided useful recommendations. All the participants will reconvene by the end of March to share their progress. The next mini-Hackathon will address how to implement a FAIR Data Point.