Newsletter

*|MC:SUBJECT|*

FOUR YEARS OF RESEARCH

In January 2015 MyCyFAPP started its path towards what it seemed a dream. Four years later, the Consortium has reached its goals and developed a real solution for improving the quality of life of children with cystic fibrosis

Back in January 2015 developing a solution that would allow patients with cystic fibrosis to self-calculate their optimal amount of pancreatic enzyme dose based on a scientific method seemed nearly impossible. It required generating new knowledge on food science technology, creating a complete food database; developing an easy-to-use mobile app; coordinating the six Cystic Fibrosis units involved in the Project; designing a pilot study and a clinical trial… 

After four years of work, MyCyFAPP has achieved the solution. Preliminary results of the clinical trial confirm that patients can improve their well-being using the new methodology for calculating the PERT dose.

In the following months, the team will continue sharing with the scientific community the conclusions of the Project. The consortium is currently working for making the app available to all patients with cystic fibrosis in Europe. We will keep you informed!

MyCyFAPP has been possible thanks to the contribution of more than 40 professionals that have worked and built each of the elements of MyCyFAPP. Also, thanks to more than 150 patients that have participated in the pilot study and the clinical trial, investing their time and effort. And last but not least, thanks to more than 40 volunteers that participated in the co-design process with their suggestions. 

Next 25th-26th February the final review of MyCyFAPP will take place in Brussels.

LAST SCIENTIFIC PUBLICATIONS

Influence of particle size and intestinal conditions on in vitro lipid and protein digestibility of walnuts and peanuts.
Food Research International.

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

Journal of Functional Foods. 

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

Journal of Functional Foods.

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

International Journal of Food Sciences and Nutrition.

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

In the following months, more scientific papers will be published. Keep yourself updated in our website

READ MORE
INITIAL ANALYSIS OF THE CLINICAL TRIAL INDICATE THAT PATIENTS HAVE IMPROVED THEIR QUALITY OF LIFE

CHILDREN REDUCE THEIR GASTROINTESTINAL SYMPTOMS AND THEIR WORRIES ABOUT SUFFERING PAIN OR OTHER ABDOMINAL DISCOMFORT

The scientific team of MyCyFAPP is still analysing the results of the clinical trial. The first statistical data have already confirmed that patients participating in the clinical trial have improved their wellbeing

Along six months, 160 patients from 6 European Cystic Fibrosis Units have participated in the clinical trial of the APP. Under the close supervision of their healthcare units, they have used the app on a daily basis to self-calculate their optimal dose. 

The results of the clinical trial, that has just finished, have proved that the new calculation method is valid as patients have improved their wellbeing in each of the scales analysed. In fact, patients have significantly reduced their gastrointestinal symptoms and their worry to suffer pain or any other abdominal symptoms.

On the other hand, the clinical trial has confirmed that patients have surpassed the average coefficient of fat absorption of 90%. This was one of the set goals of the project as this confirms that the PERT dose suggested by the app is appropriate for absorbing the fat and nutrients of food.

An educational project

In addition to the improvement of the symptoms, some patients and parents have also gained knowledge with respect to food and enzyme dosage. As the mother of one of the children participating in the clinical trial explains "now we have a better insight into nutrition in cystic fibrosis and can adapt our nutritional habits in order to increase fat and proteins in a healthy way"

WHAT'S NEXT?

MyCyFAPP final goal is to develop a real solution for patients with cystic fibrosis. For this reason, once the clinical trial has confirmed that the app developed improves the wellbeing of patients, the Consortium will carry on working to find a way for making the app available to patients.

Without the contribution of hundreds of children, teenagers and their families, MyCyFAPP would have never been possible. Patients have not only participated in the clinical trial they have also provided relevant feedback since the beginning, helping us to design the best possible solution. 

MYCYFAPP IN THE MEDIA

Patients participating in MyCyFAPP clinical trial reduce their gastrointestinal symptoms and the worry about suffering pain or other abdominal symptoms. 
Cystic Fibrosis app reduces child's symptoms and takes worries away. Read more




A clinical trial proves the efficacy of an app for calculating the optimal dose of pancreatic enzymes. Read more

DISSEMINATING MYCYFAPP 

MyCyFAPP dissemination and communication strategy has aimed at reaching specialized targets such as researches, healthcare professionals and ICT developers, but also patients and the general population. With this goal, at the beginning of the Project, several communication channels were set up. 

By the end of the Project we have reached the main goal of dissemination: promoting interest in cystic fibrosis and raising awareness among the population. 

We are a multidisciplinary research team, integrated by nutritionists/dieticians, paediatric gastroenterologists and pulmonologists, food technologists and engineers. IT experts, game developers, software developers, psychologists, biologists and patients’ representatives who will bring their expertise to ensure the successful development of the project through a holistic and integrative approach of the different and complementary areas of knowledge and expertise included.

Copyright © *|CURRENT_YEAR|* *|LIST:COMPANY|*, All rights reserved.
*|IFNOT:ARCHIVE_PAGE|* *|LIST:DESCRIPTION|*

Our mailing address is:
*|HTML:LIST_ADDRESS_HTML|* *|END:IF|*

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

*|IF:REWARDS|* *|HTML:REWARDS|* *|END:IF|*

Subscribe to our mailing list

* indicates required

Privacy pokicy

You can change your mind at any time by clicking the unsubscribe link in the footer of any email you receive from us, or by contacting us at info@mycyfapp.eu. We will treat your information with respect. For more information about our privacy practices please visit our website. By clicking "suscribe", you agree that we may process your information in accordance with these terms.

We use MailChimp as our marketing automation platform. By clicking below to submit this form, you acknowledge that the information you provide will be transferred to MailChimp for processing in accordance with their Privacy Policy and Terms.

logo DEFINITIVO copy

euflagProject funded by the European Union
under the Grant Agreement number 643806

logoehealth

MyCyFAPP is a project funded by the European Commission under the Research and Innovation Framework Programme “Horizon 2020”