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Innovative approach for self-management and social welfare of children with cystic fibrosis in Europe: Development, validation and implementation of an mHealth tool (MyCyFAPP)

Innovative approach for self-management and social welfare of children with cystic fibrosis in Europe: Development, validation and implementation of an mHealth tool (MyCyFAPP)

Kategori
Vitenskapelig artikkel
Sammendrag
Introduction: 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.
Methods and analysis: 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.
Ethics and dissemination: 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.
Oppdragsgiver
  • EC/H2020 / 643806
Språk
Engelsk
Forfatter(e)
  • Joaquim Calvo-Lerma
  • Celia P Martinez-Jimenez
  • Juan-Pablo Lazaro-Ramos
  • Ana Andrés
  • Paula Crespo-Escobar
  • Erlend Stav
  • Cornelia Schauber
  • Lucia Pannese
  • Jessie M Hulst
  • Lucrecia Suarez
  • Carla Colombo
  • Celeste Barreto
  • Kris De Boeck
  • Carmen Ribes-Koninckx
Institusjon(er)
  • Universidad Politécnica de Valencia
  • University of Cambridge
  • Wellcome Trust Sanger Institute
  • Spania
  • SINTEF Digital / Software Engineering, Safety and Security
  • Tyskland
  • Italia
  • Erasmus MC: Univeritair Medisch Centrum Rotterdam
  • Università degli Studi di Milano
  • Portugal
  • Universitair Ziekenhuis Leuven
År
Publisert i
BMJ Open
ISSN
2044-6055
Årgang
7
Hefte nr.
3