Design and Development of an Information System to Manage Clinical Data about Usher Syndrome Based on Conceptual Modeling

Abstract

[EN] The inefficient management of clinical data in many research environments is a problem which slows down the service provided to patients. The benefits of an Information System created following the conceptual modeling rules have been proved in multiple environments with data management difficulties. The main hurdle to overcome is the large gap between the language and concepts employed by informaticians and the ones used by biologists. The work described in this paper shows how these technologies can also be applied to the clinical domain, after a long period of mutual approaching in order to understand each other. The research clinical data of an expert research group on Usher syndrome have been studied, analyzed and redesigned using conceptual modeling, helping this group to offer a better service.