EJP RD tool for FAIRification of patient registries, made for the VASCA Registry, now available!

A rare disease registry codebook has been created thanks to a joint effort by researchers from Radboudumc and Amsterdam UMC (VASCERN Healthcare Providers (HCPs)).

Access the codebook here

EJP RD is designing templates for FAIR registries. The Vascular Anomalies (VASCA) registry for patients with vascular malformations, jointly designed by Radboudumc, LUMC and CastorEDC and led by VASCA Working Group Co-Chair and VASCERN Registry Group Chair, Professor Leo Schultze Kool, is one of the first FAIR registries that implemented the European wide accepted standards for Common Data Elements (CDEs) of rare disease registries.

To facilitate the application of the template to other registries, EJP RD partners Radboudumc and Amsterdam UMC joined forces and created a codebook for the CDEs. The codebook contains the mappings of the CDEs to ontologies and brings together the definition (for humans) as well as the identifiers/code used in the EJP RD CDEs Semantic Model to annotate each data element (for computers), increasing interoperability of data. The codebook can be used via the iCRF Generator Tool, which takes the content of the codebook, and creates interoperable CRFs (iCRFs) that can be implemented by several major EDC software providers, such as Castor (used by the VASCA Registry) and RedCap. This allows for an easier integration of data from registries built by different EDC software and consequently to databases that follow the FAIR data principles: Findable, Accessible, Interoperable and Reusable.

“The iCRF developers and the VASCA team made the CDE codebook available in such a form that all the 24 ERNs for Rare Diseases can reuse a template, instead of designing eCRFs from scratch while implementing their registries.” – Bruna dos Santos Vieira, Data Steward at Radboudumc.   

We congratulate everyone who made this possible, including:

  • Karlijn Groenen, Annika Jacobsen, Martijn G. Kersloot, Rajaram Kaliyaperumal, Ronald Cornet, Peter A. C. ’t Hoen, Bruna dos Santos Vieira, Marco Roos, Leo Schultze Kool (the development and implementation team of the VASCA registry and semantic model)
  • Gurnoor Singh, Bruna dos Santos Vieira, Peter A. C. ’t Hoen, Sander de Ridder, Jeroen Beliën (for the development of the codebook)
  • European Joint Research Center – JRC (development of Common Data Elements)
  • Radboudumc, VASCERN, EJP RD (Funders)

We hope that this codebook will assist other ERNs in creating their FAIR registries and we will update you soon with more information on the VASCERN Registry project.

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