Opportunities for vein-to-vein datasets from a blood establishment perspective: Towards a 'Pan-European Transfusion Research InfrAstructure'.

Abstract

Background and objectives: The 'Pan-European Transfusion Research InfrAstructure' (PETRA) project was established to advance the use of donor, blood product and patient datasets in Europe, aiming to benefit both patient and donor health. Here, the initial PETRA objective was to describe the landscape of existing donor and blood establishment (BE) databases.

Materials and methods: An online survey was circulated to the European Blood Alliance's BE-members. The survey collected information on the feasibility of accessing donor data, and challenges and possibilities for linking these datasets with information on the associated blood products and transfusion recipients, and donors' own health records.

Results: Seventeen BEs across 16 countries completed the survey. The majority could, in principle, link their donor data to product data (13 BEs, 76%) and recipient data (10 BEs, 59%) for research purposes. However, capabilities were limited and in only 5 of 17 BEs was the donor to recipients' linkage an automated process. BEs reported significant challenges to achieve full vein-to-vein linkage, including legal constraints and lack of consent (11 BEs) and resources (10-14 BEs). Information technology and data issues as well as lack of knowledge and training were cited as obstacles by a minority of BEs.

Conclusion: Whilst the survey results suggest considerable interest in developing linkages between blood donors, their products and recipients, many challenges remain due to a variety of obstacles. First steps in working towards a PETRA may be assistance to navigate legal frameworks as well as investing in resources and quality and harmonization of data collections.