The project addresses the problem of the cystic fibrosis (CF) carriers following two lines of research and service: one of information and training, the other of health technology assessment with a multidisciplinary approach. The first line plans to create a website that represents a tool for an informed choice and aims to inform the population about the existence of the carrier test, the different ways in which it can be performed and the quality criteria. The website will allow users to guide the choice of whether or not to undergo the test, at what time, and in which version (targeted on CF or extended to other pathologies) and educate on the correct interpretation of the test result. The second line of research will focus on health technology assessment (HTA) with the aim of performing an in-depth assessment of cystic fibrosis carrier screening in the Italian context. This part of the project aims to evaluate the efficacy, safety and any impact in organizational, economic, ethical, social and legal terms of the screening of the healthy carrier aimed at the general population.
The aim of the project is to reach, inform and train the largest possible number of people potentially interested in carrying out the carrier test, including health professionals who propose the test and are interested to deepen their knowledge through the use of a simple and interactive tool which also allows for self-assessment. These tools will encourage an informed and conscious choice on whether to access the carrier test.
who adopted the project
Delegazione FFC Ricerca di Milano

€ 100.000
Delegazione FFC Ricerca di Catania Paternò

€ 20.000
Antonio Guadagnin & Figlio Srl

€ 8.000
Delegazione FFC Ricerca di Como Dongo

€ 41.826