Mission – The Cystic Fibrosis Centre of the Tuscany Region (CFC) is a Organized Autonomous Structure (SOSA) of the Interdisciplinary Specialized Department – Medicine Area of the Meyer Children’s Hospital (decrees N. 133 of 29/12/2015, N. 134 of 30/12/2015 and N. 140 of 30/12/2015).
The CFC’s mission, as a regional referral center, is to provide the following specialized services on behalf of patients who are affected by cystic fibrosis (CF) and related diseases associated with the CFTR gene:
a) To deal with their health problems on a continual and multidisciplinary basis over time (from pediatric age to adolescence and adulthood);
b) to carry out research designed and intended to improve patients’ survival and quality of life, and to identify improved therapies for CF;
c) to collaborate with local hospital, regional, national and international initiatives which will guarantee the best quality of healthcare and highest possible standards of cure to the patients, by promoting the definition of outcome measures which are “patient-oriented” through active participation of patients, their families and representatives in diagnostic and therapeutic procedures, and by involving them in those programs designed to improve the organization and delivery of diagnostics and therapies.
The CFC will carry out the following objectives, according to what has been established by Italian law n. 548 (23/12/1993) and the Programmed Activities for Cystic Fibrosis of the Tuscany Region (N. 254 of 06/04/2009):
- Inform public opinion by providing knowledge regarding the healthcare needs of CF patients and research about the disease;
- Organize and offer prevention measures which have been shown to be efficacious and practicable, such as early diagnosis through neonatal screening programs, diagnosis of healthy carriers in the families of patients and by heterozygote identification through neonatal screening, prenatal diagnosis in couples who are healthy carriers; furthermore, a regional pilot project to diagnose carriers in the general population is being considered;
- Organize assistance to CF patients on an in- and out-patient basis through the endeavors of a multidisciplinary team, responsible for diagnostic and therapeutic activities, providing also home care of patients, through coordination and integration of regional resources;
- Organize a network of specialists for both pediatric and adult patients, to help with diagnosis and therapy;
- Integrate pediatric and adult assistance by sharing diagnostic and therapeutic strategies, by using a common electronic and paper demographic-clinical patient database, by attending common weekly meetings of the multidisciplinary team to monitor single individuals being treated and to audit groups of patients. From these meetings information on how to improve the quality of healthcare and management of clinical research will emerge;
- Organize educational activities regarding diagnostic and therapeutic methods, as well as ways of communicating with patients, for members of the multidisciplinary team and others working in the field;
- Identify know-how and technological capabilities within the CFC, the Region, and on a national and international basis, to link with internal procedures, in order to promote and develop innovative diagnostic and therapeutic procedures as well as original and competitive scientific research;
- Develop partnerships with patient-family organization such as the Lega Italiana Fibrosi Cistica of the Tuscany Region, to promote empowerment and share priorities and resources for carrying out common objectives.
Vision – At this point a reference model for assistance to patients with CF, a chronic, evolving pathology, and for translational scientific research on CF, has been created. The realization of these two goals should improve over time through these two principal directions:
a) by focusing more attention on CF patients and their families, in order to personalize treatment and care;
b) by improving specific assistance methods and competences, as well as research on this disease, to maintain an important role as a partner in assistance and international multicenter research networks.