CINECA stakeholder engagement session at IHCC
CINECA organised its first stakeholder engagement session at the International Cohorts Summit held in Reykjavík, Iceland in April 2019. The aim of the session was to introduce the CINECA project and its objectives, and then to gather information on the challenges and requirements of other stakeholders to ensure our work is relevant beyond our consortium. The meeting was attended by representatives from several countries and cohorts.
The feedback demonstrated the need for better phenotype data in terms of depth, linkage to outside sources and particularly harmonisation. There was generally an issue about lack of human resources for data curation, management and often analysis. For low/middle income countries there were additional limitations in facilities for sharing data as well as in other IT infrastructure. The outcome of the session was a set of recommendations for a discussion forum for sharing experiences and challenges among cohorts; a webinar series that is educational, starting with one on data harmonisation, and workshops or online training in a number of topics, including data curation and harmonisation; data management; federated data analysis and general bioinformatics.
About the IHCC
The International 100K Cohort Consortium (IHCC) was established in 2018 at the request of the leaders of the Heads of International Research Organizations (HIROs) through a collaboration between the Global Genomic Medicine Collaborative (G2MC) and the Global Alliance for Genomics and Health (GA4GH).