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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.

Periodic Reporting for period 3 - MyCyFAPP (Innovative approach for self-management and social welfare of Cystic Fibrosis patients in Europe: development, validation and implementation of a telematics tool.)

Reporting period: 2017-07-01 to 2018-12-31

An accurate pancreatic enzyme replacement therapy (PERT) and adequate eating habits, arise as early nutritional intervention, able to provide better nutritional status and Cystic Fibrosis (CF) patients’ welfare from early stages, avoiding complications associated to the development of the disease. However, achieving these goals remains a challenge due to the lack of scientific knowledge and adequate tools. Addressing these issues will allow for the creation of an ICT tool that is able to optimally adjust PERT and to establish and follow up nutrition in Cystic Fibrosis patients.
By means of our innovative and portable ICT tool we aim to improve the socio-economic impact of the disease, intertwining patient empowerment, education and training with self-management and prevention of secondary CF-complications. The multidisciplinary and complementary approach of this co-developed integrative PROJECT aims at guaranteeing the patient’s adherence to the treatment and the most optimal outcome of the nutritional intervention. The beneficiaries of the application comprise patients, caregivers, families and health professionals as well as health monitoring authorities. MyCyFAPP is tailor-designed and will be validated in clinics for CF self-management and monitoring, becoming a competitive market product in Europe. This APP will have a key role as a decision support system, boosting the growth and competitiveness of the participating SMEs in Europe, which will ensure the market uptake and the MyCyFAPP distribution for the benefit of the patients.
The main objective is to get to a scenario in which self-management of PERT and nutrition in the European CF patients by means of an APP is progressively achieved and successfully implemented. The co-developed APP aims for a personalised and accurate control and monitoring of the disease thanks to the interaction between health professionals and patients and to the tailored evidence-based tools and resources specifically developed through the Project.

1. Health and nutritional status improvement
2. Improved Quality of life both for patients and their families.
3. Economic savings both for the health system and for the patients’ families.
During the first year, WP1 mainly produced scientific results derived from the European study on CF nutritional habits, what allowed for the identification of the main nutritional imbalances to be addressed in the project. Thus, during the second period, this knowledge was used as the ground to generate tools being used as main components of the self-management App development (WP5): the nutritional composition databases and the nutritional recommendations handbook. Besides they have been used as references to build-up the game App (WP5). In the context of WP2, the in vitro digestions have been running up to date. In this WP the generation of ground breaking knowledge related to lipids digestion, have contributed both to going beyond the state of the art and to setting up a preliminary, scientifically valid method to adjust the dose of PERT according to food characteristics. The results are being reported in scientific articles. Besides, the resulting predicted doses database has been used in the software development (WP5) to build up an essential part of the app (the enzyme dose predictor), and in the pilot study, where the new criterion for PERT adjustment has been tested (WP3). In this last, the study involving 43 participants, concluded that the adjusting approach led to good results, and that an additional assessment of the dosing criterion was going to take place in the frame of the clinical trial (WP6). In parallel, WP4 actions, allowed for the successful validation of the mHealth solutions: the game App, the self-management App and the professional web tool.
With all the results, the software development (WP5) came to a successful end, including the mid-term evaluation of all three products (game App, self-management App and professional web tool) beforehand. Once all the final products were released, a comprehensive description of each of them, including all the features, was established. On the basis of it, the protocol for the clinical trial (WP6) was drafted. Then, the training activities (WP7) were prepared, in order to guarantee the implication and smooth participation of all the parts (health professionals and patients) in the clinical trial.
As for the dissemination activities (WP7), We have released the Newsletter every three months, in which the progress of all the areas of the project is summarised. The Project has been in the media channels in three occasions: the kick-off and the 4th Progress Meeting, and when announcing the coming APP. Several dissemination strategies to increase awareness of the project and the disease have been launched. 40 associations of patients receive the NL (40.000 patients / association), we have got 595 followers on Facebook, 10000+ website views and 70+ presentations of the project and its results to scientific events.

The results from the exploitation area (WP8), include the definition of the possible business models related to the final product, according to the results of a research of the state of the art about the situation of CF care among the globe plus the ICT solutions currently available in the market stores. Then the interim exploitation plan was also set-up, which formulated the baseline strategy and identified the project’s exploitable and viable products as regards to a business formulation (9 in total). Finally, the establishment of the intellectual property rights has started to be defined. The approach to the pharma industry and other key stakeholders is scheduled for the coming period.
In the first year of activity, the Project progressed in the exploratory and creative activities, concentrated in WP1 to WP4. In this second reporting period, all the Project’s research areas have produced a high amount of newly generated knowledge, which is expected to increase along the Projects’ course. While these outcomes are essential for the project and have been produced specifically for its purposes, they are of high value to contribute to the scientific literature, since all the areas of the project have gone beyond the state of the art throughout the reporting months.
MyCyFAPP aims to contribute significantly to the adoption of open access by the participants of the European Research Area (ERA), and to comply with the open access policies and rules of participation set out for Horizon 2020, as it is the case of the two published articles so far.