SIGIBio - Sistema de apoio à gestão da informação de biobancos e biorrepositórios para fins de pesquisa

Abstract

The scientific and technological advances observed in the last decade in the health area have created new paradigms, especially in the fields of genetics, cell therapy, molecular biology and bioinformatics, modifying the directions of basic, clinical and translational research that are fundamental for the development of research in postgraduate courses. In view of this, the need arose to establish the banks of biological materials, the so-called biobanks and bio-repositories, which store a great variety of human biological samples and associated data. In addition, biobanks and bio-repositories have information about research participants, such as: medical records, epidemiological records, and consent forms. However, the storage of these data implies care in ethical issues, privacy and data protection. It has been found that it is a great challenge to manage and store enormous amounts of information originating from biological materials, and to this day traditional spreadsheets are used, which are not adequate to maintain control of this information. Therefore, there is a shortage of biobank and bio repository management systems that can support the storage and access control of these samples. In this context, the objective of this study was to conduct a systematic literature review on the management of information from biological samples to define requirements and implement a prototype of a support system for the management of information for biobanks and bio-repositories. The requirements were validated through the definition of use scenarios, and then a prototype was implemented. Both the scenarios and the prototypes were evaluated by health research professionals. According to the review, to address the complex management needs of these data, the authors reported on the importance of quality management systems for biobanks and bio-repositories. And to ensure the quality of these systems it is necessary that they be robust, open source, web-based, with the possibility of tracking, data sharing, security, reliability and that they comply with the functional requirements. The result of scenarios the evaluation showed that the proposed requirements meet the expectations of health researchers. The evaluation of the prototype also generated a positive result