Cystic Fibrosis (CF) is a genetic disease with the higher incidence in Europe, which causes severe damage to the respiratory and digestive systems that may lead to malnutrition and stunting, very frequently observed in the past. Nowadays there is no reason to accept malnutrition and growth retardation in CF patients. Provided we are able to ensure the patient a combination of an adequate nutritional intake and a personalized pancreatic enzyme replacement therapy, we will generally be able to guarantee a normal growth and nutritional status, avoiding complications associated to the progression of the disease.
The project, MyCyFAPP-Innovative approach for self-management and social welfare of Cystic Fibrosis patients in Europe: development, validation and implementation of a telematics tool, aims at the self-management of enzyme replacement in the European CF patients by means of a mobile application (APP) that allows for a personalized and accurate control and monitoring of the disease thanks to the interaction between health professionals and patients. The project will develop an innovative and portable Information and Communication Technology (ICT) tool that may encourage the patient’s adherence to the treatment and the best outcome of the nutritional intervention mainly in childhood through a multidisciplinary and complementary approach.
The initiative is financed by the European Commission under the Framework Program for Research and Innovation Horizon 2020, and integrates different research group’s experts, universities and companies, coordinated by Hospital Universitario La Fe from Valencia. The Cystic Fibrosis Unit of Hospital Ramón y Cajal, the centre of IRYCIS, takes also part in this interesting project; the responsible scientist of IRYCIS is the dietician María Garriga who leads a team of three pediatricians, Lucrecia Suárez, Adelaida Lamas and Marta Ruiz de Valbuena and one nutritionist, María del Mar Ruperto.
The beneficiaries of the application comprise patients, care-givers, families and health professionals as well as health monitoring authorities. MyCyFAPP is tailored designed and will be clinically validated for CF self-management and monitoring, becoming a competitive market product in Europe. The expected outcomes derived from the utilization of the software are a health and nutritional status improvement through a precise enzyme dosage, a subsequent life quality and wellbeing improvement, intertwining patient empowerment, education and training with self-management and prevention of secondary CF-complications.
This APP will have a key role as decision support system, boosting the growth and competitiveness of the participating SMEs in Europe which will ensure the commercial exploitation of the results, the market uptake and the MyCyFAPP distribution for the benefit of the patient.