FAIRVASC – building registry interoperability to inform clinical care

FAIRVASC reaches an important milestone

The FAIRVASC consortium recently reached the half way point of the FAIRVASC Project! To discuss our completed tasks and future goals the team met in Florence, Italy in December 2021 where Professor Augusto Vaglio organized an amazing space for our panel discussion. Representatives of each institute and the patients organizations in FAIRVASC met for 2 days on 06 and 07 December 2021 for our M18 plenary meeting in a hybrid event. The meeting was officially opened by the Regione Toscana funding agency and Meyer Children’s Hospital. Subsequently the main task leaders in FAIRVASC provided an update on their current activities. Many of the project milestones  in FAIRVASC have been reached and we had an opportunity to discuss them and plan for the future. Triplestores have been established locally at registry sites, the FAIRVASC user interface has been developed and data sharing particulars are being arranged. All the registry sites have been trained in the FAIRVASC technical architecture. Queries can be agreed and posed by FAIRVASC researchers over the FAIRVASC dashboard user interface and aggregated results are sent back, with small cell counts suppressed. It is a result of constant cooperation between different FAIRVASC Teams. The QIT team develops the queries which drives the requirements for data harmonisation though the HIT team. Harmonisation drives ontology development, which is crucial to create the interface, and then there is feedback from the FIT team to the QIT team, and so on, in a cyclical development, see a detailed description of the FAIRVASC teams here (https://fairvasc.eu/the-project/). We also discussed data quality analysis in FAIRVASC which showed high levels of correctness and consistency in our data and a FAIRVASC handbook which is being developed for future onbording of new registry sites. Day 1 of our plenary meeting concluded with an excellent presentation from guest speaker Professor Mark D Wilkinson (centre of Plant Biotechnology and Genomics (UPM-INIA) in Madrid, Spain) on FAIR EJPRD approaches. On day 2 of our plenary meeting the consortium had detailed discussions on future FAIRVASC activities which included a presentation of initial results of clustering analysis from FAIRVASC partner LUND. Plans for future communciation and disemination activites included discussion of initial plans for the FAIRVASC Hackathon, where the FAIRVASC team will meet with another rare disease group to repurpose the FAIRVASC ontology for their disease as a proof of concept of the FAIRVASC infrastructure. The meeting concluded with introductions from future registries in the FAIRVASC pipeline in Portugal, Australia, Switzerland, Spain and Turkey. The FAIRVASC team are looking forward for the next FAIRVASC plenary meeting which will take place in Dublin, Ireland on 07 April 2022 straight after the Vasculitis and ANCA Workshop (https://vasculitis2022.org/), both hosted by FAIRVASC Technical Coordinator Profesor Mark Little of TCD.