Phase 1. 1 in 30 and you don’t know it.

A web platform for a better comprehension of the cystic fibrosis carrier test

Phase 1. 1 in 30 and you don’t know it.

A web platform for a better comprehension of the cystic fibrosis carrier test
€ - still needed
0%
€ 169.826 € goal

Partner

Cinzia ColomboPaola Mosconi (Lab. di Ricerca per il Coinvolgimento dei Cittadini in Sanità – Istituto Mario Negri); Chiara GerardiRita Banzi (Centro Politiche Regolatorie in Sanità – Istituto Mario Negri); Emanuela Foglia, Lucrezia Ferrario, Daniele Bellavia, Elisabetta Garagiola, Fabrizio Schettini (LIUC Università Carlo Cattaneo); Giulia Candiani, Dania Puggioni (Zadig srl)

Researchers

Category

Duration

1 anno

Goal

€ 169.826 €

Funds raised

€ 169.826 €

Objectives

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

OTHER PROJECTS

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Strategic Project FFC Ricerca 2024. 1 in 30 and You Don’t Know It. Phase 3

A web platform for a better comprehension of the cystic fibrosis carrier test

Strategic Project FFC Ricerca 2021-2023. Kaftrio in advanced disease

Phase 1. Safety and effectiveness of Kaftrio in patients with cystic fibrosis and advanced lung disease: an observational, multicenter study in collaboration with Italian CF Society (SIFC) and the regional Italian CF centers.

Strategic Project FFC Ricerca 2021-2023. Molecules 3.0 for CF. Phase 1

New generation of pharmacological modulators to rescue mutant CFTR protein