+34 96 124 67 12
info@mycyfapp.es
Horizon2020

FAQ

1. What is the purpose of the APP?

The purpose of the APP is helping children with Cystic Fibrosis to reach their optimal pancreatic enzyme dosage. It also contains information about the conditions and it stores information thus your doctor and dietitian can follow the evolution of your symptoms and the evolution of your nutritional goals.

2. Why is nutrition so important for patients with cystic fibrosis?

One of the associated problems in patients with cystic fibrosis are digestive as the body is not able to supply the necessary pancreatic enzymes. If this occurs, despite having a healthy diet, you may have stool and abdominal problems and problems to gain weight.

For this reason, controlling the diet and following a personalized Pancreatic Enzyme Replacement Therapy can help to improve the health of patients with cystic fibrosis.

3. What is the pancreatic Pancreatic Enzyme Replacement Therapy (PERT)?

Pancreatic enzymes are the proteins responsible for breaking down the food you eat at the level of the small intestine. This process allows the nutrients (carbohydrates, fat and proteins) to be absorbed. However, in most children with Cystic Fibrosis these enzymes do not reach the small intestine and therefore it is necessary to take supplementary enzyme pills to help the body to absorb nutrients and avoid malnutrition, abdominal pain and diarrhoea.

If they are not properly supplied for any reason, patients need to take supplementary capsules to help your organism to absorb nutrients and avoid malnutrition.

4.How can the APP help me to find the optimal pancreatic enzyme dosage that I need?

Before designing the APP, the MyCyFAPP Consortium has carried out an extensive research in five countries incorporating dietetic habits in patients with Cystic Fibrosis and laboratory studies on the absorption of fat in circumstances similar to patients with Cystic Fibrosis.

Based on these results obtained, MyCyFAPP has developed a mathematical model which can calculate the optimal dosage for each meal considering specific needs of each patient. The app also includes a register of your symptoms so your doctor can follow the evolution.

5. What can I expect from the APP?

Changes in your diet according to your nutritional goals will be proposed and the optimal pancreatic enzyme dosage will be provided according to the new calculation model. The APP also includes a nutritional guide which will help patients to learn more about Cystic Fibrosis, nutrition, healthy lifestyle and suggestions for dishes for different purposes.

In addition, your dietitian or doctor will review the data you enter in the APP to evaluate your progress. They may also send you nutritional suggestions if they consider it necessary.

6. How can I test the APP?

The application is currently in the clinical trial phase. Patients followed in the Cystic Fibrosis Units of the partners involved in the project can participate as far as they doctors and dieticians consider they can join the Project without health risk.

If you are followed in one of the Cystic Fibrosis units implied in the project, ask your doctor if you can participate.

Only children between 2 and 18 years can participate at this stage.

7. What is the “Living with Cystic Fibrosis” handbook?

Along with the research and the app we have written a handbook for patients with cystic fibrosis and their families as we consider that learning about the condition is essential to improve your general wellbeing and the self-management of the symptoms.

8. How is my data stored?

The data you introduce to the APP will be stored at Instituto de Investigación Sanitaria La Fe (Valencia, Spain) following all security standards.

9. Who will have access to my data?

Only your doctor or dietitian will have access to the information you provide and it will only be used for medical or research purposes.They will use your data to evaluate your progress and send any suggestions they consider necessary to reach your dietetic goals.

10. Who can I ask my questions?

You can talk to any member of your Cystic Fibrosis Unit when you need to ask any questions related to the project or any other question that it may arise during the clinical trial.

If you want, you can also email us to This email address is being protected from spambots. You need JavaScript enabled to view it..