Estimate the costs of FAIR data and describe how we intend to cover these costs

Each partner has a specific fund devoted to the cost associated to FAIR data, where expenses like DRE support, publishing in open-access and data management costs are contemplated.

Clearly identify responsibilities for data management

The data management (data handling and data analysis) in FAMILY is the responsibility of the Coordinator (EMC), integrated within WP2 (FCRB), supported by WP7 (RUMC) with respect to infrastructure and by WP8 (LU) for issues related to research ethics. Procedures are based on the data management plan developed as part of WP2 (FCRB).
Furthermore, the Consortium Agreement (CA) will define the data-related processes and operating procedures within the consortium, including access to key knowledge (WP1, Concentris). In all cases, each FAMILY partner will be responsible for the databases from cohorts that they host or collect new data from (which is the case in four familial high-risk cohorts, EMC, FCRB, FIBHGM, CHUV) as well as for keeping records of the experiments undertaken, in line with good research practice and the FAIR principles. In FAMILY, all processing of data (when local regulations allow) will be implemented on a dedicated research infrastructure and implement strictest data protection standards (GDPR). Importantly, partners from non-EU countries have a security of information agreement with the EU (USA, Switzerland, UK, and Norway). The activities will be supported by WP2 and facilitated through the DRE infrastructure (WP2/7) and web portal (WP9).

Describe costs for long term preservation

A long-term data (re)use financial plan will be developed by the 48th month of the project.