Cristin-resultat-ID: 1558070
Sist endret: 31. januar 2018, 17:32
NVI-rapporteringsår: 2017
Resultat
Vitenskapelig artikkel
2017

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

Bidragsytere:
  • Joaquim Calvo-Lerma
  • Celia P Martinez-Jimenez
  • Juan-Pablo Lazaro-Ramos
  • Ana Andrés
  • Paula Crespo-Escobar
  • Erlend Stav
  • mfl.

Tidsskrift

BMJ Open
ISSN 2044-6055
e-ISSN 2044-6055
NVI-nivå 1

Om resultatet

Vitenskapelig artikkel
Publiseringsår: 2017
Volum: 7
Hefte: 3
Open Access

Importkilder

Scopus-ID: 2-s2.0-85015733435

Beskrivelse Beskrivelse

Tittel

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

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.

Bidragsytere

Joaquim Calvo-Lerma

  • Tilknyttet:
    Forfatter
    ved Universidad Politécnica de Valencia

Celia P Martinez-Jimenez

  • Tilknyttet:
    Forfatter
    ved Wellcome Trust Sanger Institute
  • Tilknyttet:
    Forfatter
    ved University of Cambridge

Juan-Pablo Lazaro-Ramos

  • Tilknyttet:
    Forfatter
    ved Spania

Ana Andrés

  • Tilknyttet:
    Forfatter
    ved Universidad Politécnica de Valencia

Paula Crespo-Escobar

  • Tilknyttet:
    Forfatter
    ved Spania
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