The Andalusian Registry of Donors for Biomedical Research: Five Years of History

Abstract

The mission of the Andalusian Public Health System Biobank is to offer the best options for biological samples of human origin and associated clinical information, protecting the rights of citizens who donate their samples for research. Since the Andalusian Biobank provides high-quality biological samples of all types in a specified format, adapting the preanalytical phase according to the requirements of the research, prospective collection and distribution of samples are being prioritized in order to contribute to the sustainability of the Biobank. The Andalusian Registry of Donors for Biomedical Research is a tool for the recruitment of donors and the prospective collection of samples. Its operation is based on the informed consent of donors for their incorporation into the Registry and contact with possible donors under request from specific projects. An additional advantage of this unique initiative is to ensure that societal actors work together throughout the entire research process, establishing alliances with patient associations and groups to develop joint actions and promote biomedical research. Here, we describe the creation, ethical–legal aspects, management and results of the Andalusian Registry of Donors for Biomedical Research after five years of operation.

Data Model for the Comprehensive Management of Biobanks and Its Contribution to Personalized Medicine

“…The technology used for its development, the Mongo DB data system, gives it great capacity and versatility to incorporate new functionalities and adapt the data model through a relatively simple configuration while maintaining the necessary security. In addition, it allows integrations with other software to facilitate access to additional information and speed up all the tasks performed [27]. Currently, nSIBAI is working in more than 20 nodes of the SSPA Biobank, operating as a virtual biobank [28,29].…”

“…• Donor management: donors with sample donations to the Biobank, and potential donors registered in the Andalusian Registry of Donors for Biomedical Research (REDMI) [27].…”

“…configuration while maintaining the necessary security. In addition, it allows integrations with other software to facilitate access to additional information and speed up all the tasks performed [27]. Currently, nSIBAI is working in more than 20 nodes of the SSPA Biobank, operating as a virtual biobank [28,29].…”

Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions

“…To lower the potential burden of providing research result updates, biobank data management systems might provide mechanisms that automate or semiautomate the process of curating preferences and for delivering some update types. As an important step in this direction, some groups have explored IT strategies to manage dynamic consent [36][37][38][39] that might be adapted for managing preferences for and delivery of research result updates. Future studies on processes to return results may benefit from exploring preference profiles, as we have in the current study, and also using those profiles in research result dissemination strategies.…”