The participation of people with rare diseases in the research, regulation and incorporation of new therapies

• Grant number: 22/05201-3
• Support Opportunities: Scholarships in Brazil - Doctorate
• Start date: September 01, 2023
• End date: March 31, 2025
• Field of knowledge: Interdisciplinary Subjects
• Principal Investigator: Marko Synésio Alves Monteiro
• Grantee: Lucas Nishida
• Host Institution: Instituto de Geociências (IG). Universidade Estadual de Campinas (UNICAMP). Campinas , SP, Brazil

Abstract

This project proposes to describe and analyze the participation of people with rare diseases in the processes of research, regulation and incorporation of new therapies in the SUS. Based on works that analyze the formation of biosocial groups that make activism on scientific research, the research will observe its effects on the logics of production, validation, and dissemination of knowledge, in a context of focus of the pharmaceutical industry on the development of drug for rare diseases and of precision health growth as a health model. The research will be based on a multi-sited ethnography focused on the actors involved in the process: associations of people with rare diseases, representatives of the pharmaceutical industry, technicians from regulatory agencies, researchers. With this, it is expected to understand how these relationships are encouraging the participation of people with rare diseases and their effects on scientific processes and, thus, to bring an analytical contribution to the studies of public participation in sciences. (AU)