title: Innovative approach for self-management and social welfare of children with cystic fibrosis in Europe: development, validation and implementation of an mHealth tool (MyCyFAPP).
abstract: For the optimal management of children with cystic fibrosis, there are currently no efficient tools for the precise adjustment of pancreatic enzyme replacement therapy, either for advice on appropriate dietary intake or for achieving an optimal nutrition status. Therefore, we aim to develop a mobile application that ensures a successful nutritional therapy in children with cystic fibrosis.
  
  
  
  A multidisciplinary team of 12 partners coordinate their efforts in 9 work packages that cover the entire so-called 'from laboratory to market' approach by means of an original and innovative co-design process. A cohort of 200 patients with cystic fibrosis aged 1-17 years are enrolled. We will develop an innovative, clinically tested mobile health application for patients and health professionals involved in cystic fibrosis management. The mobile application integrates the research knowledge and innovative tools for maximising self-management with the aim of leading to a better nutritional status, quality of life and disease prognosis. Bringing together different and complementary areas of knowledge is fundamental for tackling complex challenges in disease treatment, such as optimal nutrition and pancreatic enzyme replacement therapy in cystic fibrosis. Patients are expected to benefit the most from the outcomes of this innovative project.
  
  
  
  The project is approved by the Ethics Committee of the coordinating organisation, Hospital Universitari La Fe (Ref: 2014/0484). Scientific findings will be disseminated via journals and conferences addressed to clinicians, food scientists, information and communications technology experts and patients. The specific dissemination working group within the project will address the wide audience communication through the website (http://www.mycyfapp.eu), the social networks and the newsletter.
authors.affiliation: Instituto de Investigación Sanitaria La Fe. Avenida Fernando Abril Martorell, Valencia, Spain.|Instituto de Ingeniería de Alimentos para el Desarrollo, Universitat Politècnica de València, Valencia, Spain.
authors.forename: Joaquim
authors.initials: J
authors.lastname: Calvo-Lerma
authors.affiliation: University of Cambridge, Cancer Research UK Cambridge Institute, Cambridge, UK.|Wellcome Trust Sanger Institute, Wellcome Trust Genome Campus, Cambridge, UK.
authors.forename: Celia P
authors.initials: CP
authors.lastname: Martinez-Jimenez
authors.affiliation: Soluciones Tecnológicas para la Salud y el Bienestar, Paterna, Spain.
authors.forename: Juan-Pablo
authors.initials: JP
authors.lastname: Lázaro-Ramos
authors.affiliation: Instituto de Ingeniería de Alimentos para el Desarrollo, Universitat Politècnica de València, Valencia, Spain.
authors.forename: Ana
authors.initials: A
authors.lastname: Andrés
authors.affiliation: Instituto de Investigación Sanitaria La Fe. Avenida Fernando Abril Martorell, Valencia, Spain.
authors.forename: Paula
authors.initials: P
authors.lastname: Crespo-Escobar
authors.affiliation: STIFTELSEN SINTEF, Trondheim, Norway.
authors.forename: Erlend
authors.initials: E
authors.lastname: Stav
authors.affiliation: YOUSE GmbH. Kyreinstraße, München, Germany.
authors.forename: Cornelia
authors.initials: C
authors.lastname: Schauber
authors.affiliation: Imaginary SRL. Piazza Caiazzo, Milano, Italy.
authors.forename: Lucia
authors.initials: L
authors.lastname: Pannese
authors.affiliation: Erasmus Medical Center, Sophia Children's Hospital, Rotterdam, The Netherlands.
authors.forename: Jessie M
authors.initials: JM
authors.lastname: Hulst
authors.affiliation: Servicio Madrileño de Salud-Hospital Universitario Ramón y Cajal, Colmenar Viejo, Spain.
authors.forename: Lucrecia
authors.initials: L
authors.lastname: Suárez
authors.affiliation: Università degli Studi di Milano. Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.
authors.forename: Carla
authors.initials: C
authors.lastname: Colombo
authors.affiliation: Associação Portuguesa para a Investigação e Desenvolvimento da Faculdade de Medicina, Lisbon, Portugal.
authors.forename: Celeste
authors.initials: C
authors.lastname: Barreto
authors.affiliation: Department of Paediatrics, University Hospital of Leuven, University of Leuven, Leuven, Belgium.
authors.forename: Kris
authors.initials: K
authors.lastname: de Boeck
authors.affiliation: Instituto de Investigación Sanitaria La Fe. Avenida Fernando Abril Martorell, Valencia, Spain.
authors.forename: Carmen
authors.initials: C
authors.lastname: Ribes-Koninckx
mesh_terms: D000293:Adolescent; D002648:Child; D002669:Child Welfare; D002675:Child, Preschool; D003550:Cystic Fibrosis / Q000628:therapy*; D005060:Europe; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D015397:Program Evaluation / Q000379:methods*; D000073278:Self-Management / Q000379:methods*; D017216:Telemedicine / Q000379:methods*
keywords: NUTRITION & DIETETICS