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. 

LAST SCIENTIFIC PUBLICATIONS

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

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

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.

MYCYFAPP IN THE MEDIA

DISSEMINATING MYCYFAPP