FFC#25/2019

Patient Engagement in Cystic Fibrosis: a cross-sectional multi-stakeholder study

AREA 5 Clinical and Epidemiological research

FFC#25/2019

Patient Engagement in Cystic Fibrosis: a cross-sectional multi-stakeholder study
€ 0 still needed
0%
€ 36.000 goal

pRINCIPAL INVESTIGATOR

Rosaria Casciaro (IRCCS Istituto Giannina Gaslini, Centro Fibrosi Cistica, Genova)

Partner

Guendalina Graffigna (Dip. di Psicologia – Engage Minds Hub Center, Università Cattolica Sacro Cuore, Milano)

Researchers

10

Category

AREA 5 Clinical and Epidemiological research

Duration

1 year

Goal

€ 36.000

Funds raised

€ 36.000

Objectives

Current care model especially in CF medicine is patient-centered and based on the concept of an “expert” patient, that is an active player in his/her care pathway, capable to establish an effective partnership with healthcare team (engagement). Scientific evidences explain the caregivers’ crucial role to sustain an active role of the patient, contributing to increase in therapeutic success potentialities in the short and long term treatment. The primary objective of this study is investigating the engagement of patients, their caregivers and doctors and to investigate different psychosocial variables, potential predictors of this engagement. In the first phase, questionnaires using validated scales will be administrated to all the stakeholders to collect quantitative data. In the second one, in-depth interviews will explore qualitative phenomena in the life stories of patients and adolescent patients’ caregivers. Through an integration between quantitative and qualitative phases, researchers want to define possible clinical guidelines that support engagement in the therapeutic programs for treatment of Cystic Fibrosis.

WHO ADOPTED THE PROJECT

Gruppo di sostegno FFC di Genova “Mamme per la ricerca”

€ 36.000

Delegazione FFC di Cerea “Il sorriso di Jenny”

€ 12.000

Matilde e Paola per Elsa

€ 10.000

OTHER PROJECTS

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Exploring the role of PKD1 in promoting CFTR stability and function at the cell surface

FFC#1/2026

Mapping proteins regulating CFTR mRNA stability to identify new therapeutic targets for nonsense mutations

FFC#2/2026

Evaluating the potential of phosphodiesterase inhibitors to enhance the efficacy of CFTR modulators and support personalized therapeutic approaches