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UMCs work together on the FAIRification of patient registries

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It has become easier for scientists working with rare diseases to exchange research data. In a joint effort of researchers from Radboudumc and Amsterdam UMC, a rare disease registry codebook has been created. The codebook facilitates data exchange between institutions with different electronic data capture (EDC) software. 

EDC software is used to design the electronic Case Report Form (eCRF) and collect data. There are many different EDC systems available, which complicates the combination and integration of the eCRFs from different studies or institutes. This stands in the way of the FAIR data principles: Findable, Accessible, Interoperable and Reusable. 

A solution to this problem is the iCRF Generator, a tool previously  developed by AUMC researchers Jeroen Beliën and Sander de Ridder as part of the TraIT2Health-RI KWF project. Jeroen Beliën: “The iCRF Generator was developed to create template interoperable CRFs (iCRFs) that can be implemented by several major EDC software providers. This makes the integration of data from registries built by different software providers much easier.”  Bruna, data steward at Radboudumc, adds: “Together with LUMC, we have been working on the semantic model of the CDEs for rare disease registries. When we learnt about the iCRF Generator tool at the Health-RI conference in January 2020, we immediately saw its value, as we have currently built the VASCA registry for vascular malformation patients, one of the first FAIR registries containing the CDEs. The iCRF Generator will help us integrate the VASCA registry data with other rare disease patient registries that use different data collection software.”   

This has been made possible by the contributions of many people: 

  • Development and Implementation of Vasca registry and semantic model: 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 
  • Development of Codebook: Gurnoor Singh, Bruna dos Santos Vieira, Peter A. C. ’t Hoen, Sander de Ridder, Jeroen Beliën 
  • Development Common Data Elements: European Joint Research Center - JRC. 
  • Funders: Radboudumc, VASCERN, EJPRD 
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