ANALYSIS OF SCIENTIFIC PRODUCTION OF INFORMATION SCIENCE IN THE CONTEXT OF RARE DISEASES

Abstract

This research aimed to investigate the participation of the scientific literature of Information Science in the scenario of information on Rare Diseases. Therefore, an Integrative Literature Review was carried out seeking to identify the works related to the theme of Rare Diseases involving information, in order to recognize the participation of the Information Science area, based on a survey in the CAPES Journal Portal with the descriptors “information science” AND “rare deseases”. The time frame analyzed was between 2000 and 2020. The results show a total of 21 articles, which address information on Rare Diseases as an indispensable resource for health professionals, patients affected by Rare Diseases and their families. Research trends include information on Rare Diseases for patients and their families, the representation of information on Rare Diseases, the librarian as a facilitator of access to information sources, databases with information on Rare Diseases, the use of search engines for the diagnosis of Rare Diseases, criteria for information on Rare Diseases, information and communication networks, tools for extracting information from texts and research in the context of Rare Diseases. It was concluded that the involvement of Information Science in the field of Rare Diseases is still incipient, in addition to the fact that research trends on Information, in this context, include, above all, information as an indispensable resource for clinical diagnosis and quality of life of patients and their families.