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Innovative approach for self-management and social welfare of Cystic Fibrosis patients in Europe: development, validation and implementation of a telematics tool.

Resultado final

WP Planning and Contingency Reports

In the first trimester an acknowledge report regarding work package planning and contingency plan will be reported

Kick-off Meeting

A summary of the kick-off meeting will be detailed including list of participants, agenda, minutes, etc.

1st Mid-Term Dissemination plan of MyCyFAPP

An evaluation of the results and the action to detect strength and weaknesses and to improve the action in orden to improve the results based on the dissemination plan.

Interviews

A compilation of videos of the interviews which give a global vision of the project will be sent to the EC. The main aim of the video is to show how EC policies help to create qualified jobs and to bring closer research to general public

1st Annual Progress and Annual Financial Report to the Commission

Report on annual progress and annual financial report will be presented.

Dissemination plan of MyCyFAPP

A detailed dissemination plan with objectives, target, messages and tools used to reach the goals of the WP7 will be send to the EC. The plan will have a detailed structure of the main channels of the communication and the objectives of each one of them.

Characterisation of dishes report

Each participant partner in WP1 will provide a detailed report on the most consumed foods and dishes regarding ingredients, size, cooking techniques, etc. This information will be further used in the fats digestibility studies.

Register follow-up on conferences and meetings

All partners have an active role in the dissemination plan as from different fields they disseminate their jobs. At the end of the project, a report on the conferences and meetings attended will be presented.

2nd mid-term dissemination report

A second report on performance and KPI analysis will be sent to the EC to evaluate the impact of the dissemination strategy.

Minutes of the 2nd EBM and 1st General Assambly Meeting (GAM)

Statement agreed on 2nd Executive Board Meeting and 1st General Assembly Meeting will be collected in a minute.

Training material

Several videos and information material will be designed to help professionals and partners involved in the project to guide patients on the use of the APP. In order to teach health-carers and patients how to use the APP and how to get involved in the project, some audiovisual materials such as videos, posters and leaflets will be designed and digitally send to the EC.

Nutritional Evaluation report of all the collected FRs

It will include the method and resources applied to perform the nutritional assessment. It will also include the results obtained and the statistical data analyses.

Nutritional Recommendations Guideline for the CF patients

The information generated in WP1 will be analyzed both by nutritionists and pediatric gastroenterologists and will be complied into a Guideline. It will include general recommendations on nutritional and care aspects of the disease and will be integrated as an interactive tool within the APP software.

Minutes of the 3rd EBM

Statements agreed on the 3rd Executive Board Meeting will be collected in a minute.

Document on MyCyFAPP poster and leaflet

Paper documentation such as posters, leaflets, and additional printed resources used in conferences and other events will be compiled.

Final Dissemination report

MyCyFAPP directly benefits end users and health care service providers involved in the treatment of the Cystic Fibrosis. The Dissemination plan aims at all the stakeholders related with the project. A report detailing the consecution and achievement of all the dissemination goals will be presented on month 48.

Clipping and press release

Along the project there will be sent at least two press releases: one at the beginning and the second one by the end. However, as there are many areas of the project that can be promoted as are of public interest, other press releases will be send when required. By the end of the project the press releases, the clipping and the impact evaluation will be sent.

Protocol for the survey and the FR

A common consensus protocol to develop all the tasks in WP1. It will include specifications on timing and formal aspects.

MyCyFAPP press release

After the grant agreement signature, MyCyFAPP will be presented in the general media (e.g. newsletters, local newspapers, etc).

Minutes of the 1st Executive Board Meeting (EBM)

Statements agreed on the 1st Executive Board Meeting will be collected in a minute.

Data base with the FRs

A database will be generated to store all the nutritional information collected via the FRs. This information will be further used both for the nutritional assessment of the diets and for the dishes characterization.

Nutritional composition database of the selected dishes

We will produce a macro nutritional composition database including not only foods but most frequently consumed dishes in the different participating countries. This database will be included in the software and will allow for the automatic calculation of the nutritional composition of the diet.

Publicaciones

User Needs in the Development of a Health App Ecosystem for Self-Management of Cystic Fibrosis: User-Centered Development Approach

Autores: Jacqueline Floch, Annabel Zettl, Lena Fricke, Tina Weisser, Lisbet Grut, Thomas Vilarinho, Erlend Stav, Antonio Ascolese, Cornelia Schauber
Publicado en: JMIR mHealth and uHealth, Issue 6/5, 2018, Page(s) e113, ISSN 2291-5222
Editor: JMIR mHealth and uHealth
DOI: 10.2196/mhealth.8236

A first approach for an evidence-based in vitro digestion method to adjust pancreatic enzyme replacement therapy in cystic fibrosis

Autores: Joaquim Calvo-Lerma, Victoria Fornés-Ferrer, Irene Peinado, Ana Heredia, Carmen Ribes-Koninckx, Ana Andrés
Publicado en: PLOS ONE, Issue 14/2, 2019, Page(s) e0212459, ISSN 1932-6203
Editor: Public Library of Science
DOI: 10.1371/journal.pone.0212459

In vitro study of cheese digestion: Effect of type of cheese and intestinal conditions on macronutrients digestibility

Autores: A. Asensio-Grau, I. Peinado, A. Heredia, A. Andrés
Publicado en: LWT, Issue 113, 2019, Page(s) 108278, ISSN 0023-6438
Editor: Academic Press
DOI: 10.1016/j.lwt.2019.108278

Influence of particle size and intestinal conditions on in vitro lipid and protein digestibility of walnuts and peanuts

Autores: Carolina Paz-Yépez, Irene Peinado, Ana Heredia, Ana Andrés
Publicado en: Food Research International, Issue 119, 2019, Page(s) 951-959, ISSN 0963-9969
Editor: Elsevier BV
DOI: 10.1016/j.foodres.2018.11.014

Nutritional status, nutrient intake and use of enzyme supplements in paediatric patients with Cystic Fibrosis; a European multicentre study with reference to current guidelines

Autores: Joaquim Calvo-Lerma, Jessie M. Hulst, Inês Asseiceira, Ine Claes, Maria Garriga, Carla Colombo, Victoria Fornés, Sandra Woodcock, Tiago Martins, Mieke Boon, Mar Ruperto, Sylvia Walet, Chiara Speziali, Peter Witters, Etna Masip, Celeste Barreto, Kris de Boeck, Carmen Ribes-Koninckx
Publicado en: Journal of Cystic Fibrosis, Issue 16/4, 2017, Page(s) 510-518, ISSN 1569-1993
Editor: Elsevier BV
DOI: 10.1016/j.jcf.2017.03.005

Effect of cooking methods and intestinal conditions on lipolysis, proteolysis and xanthophylls bioaccessibility of eggs

Autores: Andrea Asensio-Grau, Irene Peinado, Ana Heredia, Ana Andrés
Publicado en: Journal of Functional Foods, Issue 46, 2018, Page(s) 579-586, ISSN 1756-4646
Editor: Elsevier BV
DOI: 10.1016/j.jff.2018.05.025

Fat digestibility in meat products: influence of food structure and gastrointestinal conditions

Autores: Andrea Asensio-Grau, Joaquim Calvo-Lerma, Ana Heredia, Ana Andrés
Publicado en: International Journal of Food Sciences and Nutrition, Issue 70/5, 2019, Page(s) 530-539, ISSN 0963-7486
Editor: Taylor & Francis
DOI: 10.1080/09637486.2018.1542665

In Vitro Digestion of Lipids in Real Foods: Influence of Lipid Organization Within the Food Matrix and Interactions with Nonlipid Components

Autores: Joaquim Calvo-Lerma, Victoria Fornés-Ferrer, Ana Heredia, Ana Andrés
Publicado en: Journal of Food Science, Issue 83/10, 2018, Page(s) 2629-2637, ISSN 0022-1147
Editor: Institute of Food Technologists
DOI: 10.1111/1750-3841.14343

In vitro digestion models to assess lipolysis: The impact of the simulated conditions of gastric and intestinal pH, bile salts and digestive fluids

Autores: Joaquim Calvo-Lerma, Victoria Fornés-Ferrer, Ana Heredia, Ana Andrés
Publicado en: Food Research International, Issue 125, 2019, Page(s) 108511, ISSN 0963-9969
Editor: Elsevier BV
DOI: 10.1016/j.foodres.2019.108511

Lipids digestibility and polyphenols release under in vitro digestion of dark, milk and white chocolate

Autores: Carolina Paz-Yépez, Irene Peinado, Ana Heredia, Ana Andrés
Publicado en: Journal of Functional Foods, Issue 52, 2019, Page(s) 196-203, ISSN 1756-4646
Editor: Elsevier BV
DOI: 10.1016/j.jff.2018.10.028

Clinical validation of an evidence-based method to adjust Pancreatic Enzyme Replacement Therapy through a prospective interventional study in paediatric patients with Cystic Fibrosis

Autores: Joaquim Calvo-Lerma, Jessie Hulst, Mieke Boon, Carla Colombo, Etna Masip, Mar Ruperto, Victoria Fornés-Ferrer, Els van der Wiel, Ine Claes, Maria Garriga, Maria Roca, Paula Crespo-Escobar, Anna Bulfamante, Sandra Woodcock, Sandra Martínez-Barona, Ana Andrés, Kris de Boeck, Carmen Ribes-Koninckx
Publicado en: PLOS ONE, Issue 14/3, 2019, Page(s) e0213216, ISSN 1932-6203
Editor: Public Library of Science
DOI: 10.1371/journal.pone.0213216

Optimisation of children z-score calculation based on new statistical techniques

Autores: Antonio Martinez-Millana, Jessie M. Hulst, Mieke Boon, Peter Witters, Carlos Fernandez-Llatas, Ines Asseiceira, Joaquin Calvo-Lerma, Ignacio Basagoiti, Vicente Traver, Kris De Boeck, Carmen Ribes-Koninckx
Publicado en: PLOS ONE, Issue 13/12, 2018, Page(s) e0208362, ISSN 1932-6203
Editor: Public Library of Science
DOI: 10.1371/journal.pone.0208362

The Potential of Self-Management mHealth for Pediatric Cystic Fibrosis: Mixed-Methods Study for Health Care and App Assessment

Autores: Antonio Martinez-Millana, Annabel Zettl, Jacqueline Floch, Joaquim Calvo-Lerma, Jose Luis Sevillano, Carmen Ribes-Koninckx, Vicente Traver
Publicado en: JMIR mHealth and uHealth, Issue 7/4, 2019, Page(s) e13362, ISSN 2291-5222
Editor: JMIR Publications
DOI: 10.2196/13362

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

Autores: Joaquim Calvo-Lerma, Celia P Martinez-Jimenez, Juan-Pablo Lázaro-Ramos, Ana Andrés, Paula Crespo-Escobar, Erlend Stav, Cornelia Schauber, Lucia Pannese, Jessie M Hulst, Lucrecia Suárez, Carla Colombo, Celeste Barreto, Kris de Boeck, Carmen Ribes-Koninckx
Publicado en: BMJ Open, Issue 7/3, 2017, Page(s) e014931, ISSN 2044-6055
Editor: BMJ Publishing Group
DOI: 10.1136/bmjopen-2016-014931

The Relative Contribution of Food Groups to Macronutrient Intake in Children with Cystic Fibrosis: A European Multicenter Assessment

Autores: Joaquim Calvo-Lerma, Jessie Hulst, Mieke Boon, Tiago Martins, Mar Ruperto, Carla Colombo, Victoria Fornés-Ferrer, Sandra Woodcock, Ine Claes, Inês Asseiceira, María Garriga, Anna Bulfamante, Etna Masip, Sylvia Walet, Paula Crespo, Lauretta Valmarana, Sandra Martínez-Barona, Luisa Pereira, Kris de Boeck, Carmen Ribes-Koninckx
Publicado en: Journal of the Academy of Nutrition and Dietetics, Issue 119/8, 2019, Page(s) 1305-1319, ISSN 2212-2672
Editor: Elsevier USA
DOI: 10.1016/j.jand.2019.01.003

WS12.6 MyCyFAPP project: validation of the PEDsQL GI symptom scale to evaluate gastro-intestinal symptoms in children with cystic fibrosis

Autores: M. Boon, I. Claes, T. Havermans, V. Fornés-Ferrer, I. Asseiceira, A. Bulfamente, M. Garriga, E. Masip, S. Woodcock, S. Walet, C. Barreto, J. Calvo-Lerma, C. Colombo, P. Crespo, E. Van der Wiel, J. Hulst, S. Martinez-Barona, R. Nobili, L. Pereira, M. Ruperto, K. De Boeck, C. Ribes-Koninckx, MyCyFAPP study group
Publicado en: Journal of Cystic Fibrosis, Issue 17, 2018, Page(s) S23, ISSN 1569-1993
Editor: Elsevier BV
DOI: 10.1016/s1569-1993(18)30189-9

ePS5.08 MyCyFAPP project: use of a mobile application for self-management of PERT improves gastrointestinal related quality of life in children with cystic fibrosis

Autores: M. Boon, J. Calvo-Lermo, I. Claes, T. Havermans, V. Fornes, I. Asseiceira, A. Bulfamente, M. Garriga, E. Massip, S. Walet, C. Barreto, C. Colombo, P. Crespo, H.M. Janssens, M. Ruperto, J. Hulst, R. Nobili, L. Pereira, E. Van der Wiel, S. Vicente, K. De Boeck, C. Ribes-Koninckx
Publicado en: Journal of Cystic Fibrosis, Issue 18, 2019, Page(s) S52-S53, ISSN 1569-1993
Editor: Elsevier BV
DOI: 10.1016/s1569-1993(19)30286-3

Lipolysis kinetics of milk-fat catalyzed by an enzymatic supplement under simulated gastrointestinal conditions

Autores: Irene Peinado, Virginia Larrea, Ana Heredia, Ana Andrés
Publicado en: Food Bioscience, Issue 23, 2018, Page(s) 1-8, ISSN 2212-4292
Editor: Elsevier BV
DOI: 10.1016/j.fbio.2018.02.011

Co-designing a mHealth Application for Self-management of Cystic Fibrosis

Autores: Thomas Vilarinho, Jacqueline Floch, Erlend Stav
Publicado en: Human-Computer Interaction – INTERACT 2017, Issue 10515, 2017, Page(s) 3-22, ISBN 978-3-319-67686-9
Editor: Springer International Publishing
DOI: 10.1007/978-3-319-67687-6_1

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