Newsletter

*|MC:SUBJECT|*
Funded by the European Union
under the Grant Agreement number 643806

April 2018

Clinical trial | EHealth | Publications

Clinical trial data

As the clinical trial progresses we feel more and more excited to see the results and to assess how
 it helps to improve the quality of life of children with cystic fibrosis and their families. Up to now we have received very valuable and enthousiastic feedback from users. A Spanish mother whose daughter is participating in the clinical trial told us “Since we started using the APP, my child’s grandmother feels confident enough to give my daughter the amount of enzymes she needs. Before, she used to phone me when I was at work to ask me, but now she is able to do it on her own”.
 

“My child’s grandmother feels more comfortable and is nowadays able to give enzymes to my daughter without having to phone me at work”

Up to now, 146* patients have joined the clinical trial in the five countries participating in MyCyFAPP. We expect to reach their expectations, helping them to achieve a better control of their disease and helping them to have a good nutritional status.

The goal of 200 patients is close! Patients, clinicians and ICT developers are doing a great effort to reach it.

MyCyFAPP publishes a new paper.
Irene Peinado, Virginia Larrea, Ana Heredia, Ana Andrés. (2018).
Lipolysis kinetics of milk-fat catalyzed by an enzymatic supplement under simulated gastrointestinal conditions.Food Bioscience. Volume 23, June 2018, Pages 1-8
More info here

E-health tools for involving patients

The growing trend of technologies applied to the healthcare process are shaping the world and giving new opportunities to people with chronic diseases.

For patients suffering a chronic disease, e-health offers a wide range of possibilities to improve their follow-up, to have a better control of their symptoms and, in the end, to help them to be actively involved in their treatment. 

MyCyFAPP is a great example of how new technologies can improve healthcare: not only did we need to develop an algorithm for the Pancreatic Enzyme Replacement Therapy, but also to find a solution for using it on real time. 

Thanks to the combination of scientific knowledge, healthcare knowledge and technological experience, we can put on patients’ hand a powerful tool to self-calculate their optimal doses.

“Not only did we need to develop an efficient algorithm for the Pancreatic Enzyme Replacement Therapy, but also find a way for patients to use it”

In addition to that, the APP synchronizes the data from the self-management APP with the tool that healthcare professionals, helping doctors to follow their patient's evolution even on daily basis.

In the end, the goal of MyCyFAPP engineers is reached: helping doctors, nurses and nutritionists save time analyzing patients trends and making the treatments and the follow-up of the patients easier. 

Why educational resources matter?

We live in the information age, knowledge is just one click away from us. However, on many occasions, finding accurate information, scientifically validated and understandable is not easy for patients.

Misinterpretations and non-accurate information can lead patients to take wrong decisions.

MyCyFAPP | My Cystic Fibrosis Application | The Game

“The Living with Cystic Fibrosis handbook translates the scientific knowledge on the illness into plain language for patients and their families”

For this reason, since MyCyFAPP stared, it was seen as essential to offer patients the proper information in a way an average person could understand. The way for supervised self-management requires a more active role of the patient and, for this, it is important to help them to have a better understanding of their conditions and their symptoms. 

The “Living with Cystic Fibrosis” handbook, available within the self-management APP, aims at gathering relevant information for patients and translate the scientific knowledge into an understandable language for patients. 

MyCyFAPP on the news

Spanish public Television reports on the clinical trial. Watch the report.
Despecialist from Belgium reports on the clinical trial. Read more
European Commission promotes MyCyFAPP video. Read more

Coming soon
 

Interim review 30th April

Revision of clinical trial work package, in vitro digestion studies work package, dissemination activities and an update of the financial status of the Project.


51st ESPGHAN annual meeting 

May 2018 in Geneva (Switzerland) 

Joaquin Calvo will present “A first approach to an evidence-based method to adjust PER in pediatric patients with Cystic Fibrosis”


41st annual meeting of the European Cystic Fibrosis Society

June 2018 in Belgrade (Serbia)

Prof. Mieke Boon presents validation of the PedsQL GI for use in CF (WP6).

Joaquim Calvo presents results on in vitro digestion studies (WP3)
 

Keep yourself updated on MyCyFAPP website!

MyCyFAPP Events & Conferences

Find us on

Facebook
Twitter
Instagram
Website
Copyright ©  2018 MYCYFAPP, All rights reserved.
Our mailing address is:
info@mycyfapp.eu

If you do not want to receive our newsletter
you can unsubscribe from this list
 






This email was sent to *|EMAIL|*
why did I get this?    unsubscribe from this list    update subscription preferences
*|LIST:ADDRESSLINE|*

*|REWARDS|*

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”