Abstract

The Emilia-Romagna Programme for Research and Innovation "PRIER" was born in 2005 with the aim of increasing cultural and operational conditions for the development of clinical research, useful both to the Regional Health Service (SSR) and to the private sectors of pharmaceutical and biomedical areas. In this context, the PRIER had from the beginning a double connotation: a space where the SSR can explore issues related to the development of its own research capacity; and a context where new possible ways of relating and comparison with the pharmaceutical and biomedical industry are tested. Over the years the activities of PRIER were defined by: initiatives to strengthen the system of research in SSR; development of tools to monitor activities of the research; production of clinical-organizational recommendations for the governance of innovation. In 2013 a new area of discussion and a common interest have been identified on the subject of clinical registries. In particular, it wanted to build a path of work able to identify all the possible critical and relevant points (points to consider), indispensable, necessary or useful to the construction and use of clinical registries, taking into account the points of view of all actors involved. The course began with defining the rules of the game and continued with workshops that allowed to analyse together the matter. At the end of the second workshop it was decided to make the work carried out visible: first, not to miss the opportunity offered by the past but recent discussion; secondly, to facilitate the discussion both on the issue of registers and to the adopted methodology, which sees the different actors (public and private ones) to reason together in a context for once not influenced by necessities of negotiation and government resources.

Full Text
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