Cystic fibrosis (CF) is a genetic disease, causing severe damage to the lungs and the digestive system. The affected people suffer from insufficient activity of their pancreas, often resulting in maldigestion and malabsorption, thus leading to malnutrition and growth disturbances. In Europe, about 4% of the population carry the genetic mutation, and ca. 0.3% of the European population suffer from this severe illness, which can not be cured.
An individualized therapy with enzyme replacement could relieve many of the life-shortening side effects of CF. Within the MyCyFAPP project, such a therapy will be realized in terms of an innovative information and communication technology (ICT) tool, i.e. an app and a software program.
Self-management with an appThis tool will encourage the patient’s adherence to the treatment and the best outcome of nutritional intervention, especially important for young patients.
The experts: "Nowadays there is no reason to accept malnutrition and growth retardation in CF patients. Provided we are able to ensure 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 beneficiaries of the application comprise patients, caregivers, families and health professionals as well as health monitoring authorities. MyCyFAPP is designed in a tailored way and will be clinically validated for CF self-management and monitoring, becoming a competitive market product in Europe.
This initiative was awarded a maximum budget of 5.087.507 € under the Framework Program for Research and Innovation Horizon 2020, and integrates research groups experts, universities and companies from:
- Spain: Fundacion para la Investigacion del Hospital Universitario La Fe de la Comunidad Valenciana (HULAFE), Soluciones Tecnologicas Para La Salud y el Bienestar Sa (TSB), Universitat Politecnica De Valencia (UPV), Servicio Madrileno De Salud (SERMAS);
- Italy: Università Degli Studi Di Milano (USM), Imaginary Srl (IMA); Norway: Stiftelsen SINTEF (SINTEF); Germany: YOUSE GmbH (YOUSE);
- Portugal: Associação para Investigação e Desenvolvimento da Faculdade de Medicina (AIDFM);
- Belgium: Katholieke Universiteit Leuven (KU LEUVEN);
- The Netherlands: Erasmus Universitair Medisch Centrum Rotterdam (EUMCR), Cystic Fibrosis Europe EV (CFE).