The Italian Cystic Fibrosis Research Foundation (FFC Ricerca) relies on approximately 5,000 dedicated volunteers scattered across all Italian regions who raise funds and awareness about the disease. For reasons of identity and statute, FFC Ricerca has always paid attention to the ways in which science and research are disseminated and shared with the volunteers who support it.
Among FFC Ricerca’s dissemination initiatives: publications, website columns, webinars, the annual seminar, the Transparent Research initiative, the Consultation Group.
Experts Together for Andrea aimed at promoting the creation of a study group composed of 22 volunteers, people with CF, and their family members. This group embarked on a journey of mutual understanding, cultural exchange, education, and the development of a common language. Specific tools were identified for the transfer and sharing of fundamental knowledge on basic and clinical research methodology regarding scientific aspects of cystic fibrosis.
The ultimate goal of the Experts Together for Andrea group was to collaborate with the Scientific Directorate of FFC Ricerca on research topics, its priorities, the role of patient-parents as active research subjects, clinical research outcome measures, and the dissemination of scientific results.
A first step for the creation of this group of expert volunteers is represented by a series of 8 online meetings.
RESULTS
The strategic project Esperti insieme per Andrea involved about 20 participants, including FFC Ricerca volunteers, people with cystic fibrosis, and their family members from all over Italy.
In the first year of the project, eight webinars were held on care issues, combining participants’ personal reflections with the presentation of scientific evidence on screening, diagnosis, and treatment.
During the second year of the project, training moved to the field, with eight more meetings focusing on more organizational aspects of research, the design of a research study, and an in-depth look at the Foundation’s objectives and activities.
At the end of the second year of the project, participants developed an observational epidemiological study protocol to be submitted for funding to FFC Ricerca and to be carried out in the third year of the project. The study aims to describe the health status and quality of life of the Italian CF population over the age of 40, using data from the Italian Cystic Fibrosis Registry and interviewing a sample of people with CF over the age of 40.
CHI HA ADOTTATO IL PROGETTO
UniCredit
€ 20.000
Delegazione FFC Ricerca di Campiglione Fenile
€ 10.000
Latteria Montello S.p.A.
€ 15.000