A team of research partners in seven European countries are participating in a project to develop a mobile app to help patients with cystic fibrosis and their families understand the disease.
The project, called MyCyFAPP (EU/H2020; CORDIS Project Reference: 643806), is being coordinated by the University Hospital La Fe in Valencia, Spain and the Trondheim, Norway-based SINTEF, the largest independent research organization in Scandinavia.
According to the European Commission’s (EC) CORDIS Community Research And Development Information Service, the majority of CF patients experience lifelong pancreatic insufficiency that compromises digestion of food and absorption of nutrients, such as proteins and fat, resulting in chronic malnutrition. This can contribute to stunted growth that can be avoided only by accurate enzyme replacement therapies and close nutritional follow-up. The agency recommends enzyme replacement implementation as an early nutritional intervention to provide better nutritional status and patient welfare, helping to avoid complications associated with the disease’s development. People with CF need help to ensure they are getting adequate nutrition and the correct amount of enzyme supplementation, as well as constant reminders.
The MyCyFAPP researchers say their portable tool will help promote a healthy lifestyle, combining patient empowerment, education and training with self-management and prevention of secondary CF-complications. SINTEF says MyCyFAPP is particularly designed to assist in self-management of enzyme replacement, enabling personalized, accurate, interactive control and monitoring of the disease by health professionals and patients, and will be clinically validated for CF self-management and monitoring.
Interviews were conducted with 71 people from seven European countries (Portugal, Spain, Italy, Germany, Belgium, the Netherlands and Norway). That group included CF patients, parents, professionals and a variety of organizations, in order to establish an overview of the needs such a mobile app must fulfill.