Cross-Consortia Data Sharing Session at IPK, Havana, Cuba
A cross-consortia Data Sharing session took place at the Instituto Pedro Kouri in Havana, Cuba, on 11 August 2017. As part of the collaborative effort being pursued by 3 EU-funded Zika Consortia (ZIKAction, ZIKAlliance, and ZikaPLAN) on data harmonisation and data sharing, the meeting was an important opportunity to advance the ongoing work and update participants about the work done so far.
From left to right: Annelies Wilder-Smith, Xavier de Lamballerie, Thomas Jaenisch, and Marion Koopmans
Thomas Jaenisch, from ZIKAlliance and leading this cross-consortia data harmonisation and data sharing work, conducted the discussions around the Joint Data Sharing and Virtual Bio-banking Agreements. The establishment of a joint committee for the governance of data sharing and bio-banking - the need for which was shared in a previous teleconference - was re-discussed at the meeting. This committee, comprising of two members per consortia, would form the cross-consortia governance structure.
The templates for bio-banking and data sharing agreements were drafted by scientists involved in the working group of ZIKAlliance. These were then shared for additional contributions from members of ZIKAction and ZikaPLAN. This cross-consortia data sharing group and the Research Capacity Network in Latin America and the Caribbean (REDe) are currently working on these templates in order to adopt them as blueprints for the agreements that will regulate governance and access to the data, and the biological samples being used by ZIKAction, ZIKAlliance, and ZikaPLAN.
In the absence of international harmonization – that gives way to national and regional regulations – the three consortia recognized that funding agencies should play a more significant role in driving harmonization and access to data and samples; for instance, by establishing standard recommendations for data sharing, long-term storage, and exchange of biological material between countries, and by ensuring that the data generated is comparable. It is worth noting that some of the partners preferred the term “bio-repository” instead of “bio-banking”. It was also recognized that currently different formats are required (e.g. regarding consent for bio-banking) between countries. However, standardization with regard to research protocols and data dictionaries is well advanced.
In addition to the revision of the deliverable on vertical transmission study protocol harmonization led by ZIKAlliance, data managers and researchers from ZIKAction have finalized a standardized data dictionary for these studies in collaboration with ZIKAlliance and ZikaPLAN.
As part of their collaborative work on data harmonisation and data sharing, the three EU-funded consortia will now devote efforts to the establishment of reciprocal clinical research networks and the development of an internal data sharing platform.