The Italian Twin Registry Collaborations Involving Data And Tools Sharing, Cohorts’ Harmonization, Data Integration, and Ethico-Legal Challenges

Over the past years, the Italian Twin Registry (ITR) has joined networks and consortiums for genetic-epidemiological research, and several opportunities have arisen for national and international collaborations involving data and tool sharing, as well as cohorts' harmonization. These networking efforts have led ITR to face complex ethico-legal challenges within the framework provided by the General Data Protection Regulation (GDPR) since 2018 but have also represented the occasion to address critical aspects in ITR organization and activities, looking for long-term solutions. This article describes some examples of: ITR international collaborations implying data and tools sharing; ITR national collaborations aimed to replicate general-population findings; ITR integration with national and regional administrative records; ethico-legal criticalities experienced by ITR in multicohort collaborations, and initiatives to overcome the GDPR bottleneck. Regarding collected data, ITR currently contains information on 30,362 twins of different ages and geographical areas, of whom 7797 are being asked to reconfirm their enrollment, having turned 18 or over. In the coming period, these figures may increase rapidly, thanks to the ongoing access to the National Register of the Resident Population, for which ITR is working to solve privacy-related legal issues. This will enable a systematic enrolment of large and representative twin cohorts, making ITR a valuable tool for genetic-epidemiological research and for the monitoring of relevant health outcomes in the Italian population.