Healthy and active aging is one of the greatest social challenges in EU facing longer life expectancy. Early prevention of chronic diseases that have severe impact on general well-being of patients is extremely important if we want to reach this goal and ensure sustainable health care systems in CE. Lack of development and promotion of innovative quality health services, disease management models and education have a profound negative effect. To tackle this challenge, this project will demonstrate development and pilot testing of innovative health service model in management of celiac disease (CD), by using CANVAS business model, aiming at improving knowledge, management and organizational capacities. CD is a model of a lifelong disease caused by ingestion of cereals. It affects 1-3% of population (up to 5 million in CE) of all ages. It is estimated that 80% of people having CD are un/misdiagnosed. Diagnostic delay remains 6-10 years. Undiagnosed/untreated CD leads to a number of severe (potentially preventable) complications: infertility, osteoporosis, neurological disorders, malignancies, etc., which have profound effect on quality of life. CE regions have different knowledge capacities and health care systems, which are insufficient and only partially address current problems. By transnational cooperation and analysis of differences in diagnostic approach, experts' knowledge and patient awareness and satisfaction and benchmarking of existing patient management models we will gain important data to develop e-learning tools for health care personnel and patients, to close the knowledge gap between stakeholders and to improve patient support. In each region an innovative pilot services will be tested, based on which a universal model will be designed including organizational improvements and implementation of best practices. This will enable us to develop a patient centered health care service, and thus ensure healthy and active aging of CD patients.
|Project output number||Project output||Project output quantification|
|Output O.T4.1.1||Policy recommendations||1,00|
|Output O.T1.1.1||Assessment of Celiac Disease management practices||1,00|
|Output O.T2.1.1||E-learning tool for HCPs||1,00|
|Output O.T2.2.1||E-learning tool for patients||1,00|
|Output O.T2.3.1||ICT App for HCPs||1,00|
|Output O.T3.1.1||Development and implementation of 10 pilot projects||10,00|
E-guidelines protocol of celiac disease treatment for health care professionals was designed by partnership to help health care professionals to improve diagnostic proces and management of celiac disease.
This e-brochure was prepared building on available knowledge from bilateral SLO-HU LQ-CELIAC project.
Nuša 11 years and mom Simona: »The day, when our oldest daughter was diagnosed with coeliac disease was one of the happiest days for our family. The diagnosis “coeliac disease” was among the suspicions of doctors for the best and the least harmful disease. We were happy, that the marathon from one doctor to another had finished and that we finally identified what was wrong and how we can help our daughter«.
CE regions have different knowledge capacities. To close the knowledge gap between HCPs and to improve their knowledge as well as diagnostic process, we have prepared e-guidelines protocol for celiac disease treatment.
36. International Carnival Parade took place in Rijeka on 10th February 2018. Focus IN CD project partners University Hospital Center Rijeka, Association of celiac patients Primorsko – goranska County and Primorje – Gorski Kotar County participated in gastronomical event named Kotlić (kettle).
KOTLIĆ is a competition of different teams in preparing traditional open fire dishes, prepared in a kettle.
We prepared gluten-free soup and actively promoted the topics of Focus IN CD project among citizens of Rijeka and their guests.
Within the framework of the 35th Rijeka Carnival, on February 10th 2018. UHC Rijeka, Association of Celiac Patients of the Primorje-Gorski Kotar County and Primorje-Gorski Korat County arranged the public event about celiac disease and diet therapy. During the event, flyers with all the important information about activities in the project Focus in CD were shared with the citizens.
Members of Croatian project teams joined forces to cook gluten-free vegetable minestrone which was distributed to citizens, simultaneously rising awareness of special requirements for food preparation.
Also, the next big activity of the project, a celiac disease testing covering 1500 school children was announced to the public. This pilot project will be leaded by the Association of Celiac Patients of the Primorsko-goranska County in partnership with UHC Rijeka, with the purpose of early disease prevention as well as prevention of its complications.
Additionally, one of the goals of this activity will be to collect important information about the prevalence of the celiac disease, which, later on, will be displayed to the local authorities and the Croatian Ministry of Health, in order to point out the importance of new management and control of this disease as well as to the patients.
An education event devoted to mentors, who are helping new diagnosed celiac disease patients to better cope with chronic disease diagnose, was organized in Maribor, in frame of our pilot project on Saturday, 3rd February 2018, under the professional guidance of psychologist Jernej Vidmar. Mentors presented their first mentoring experiences.
Mentors gained new knowledge and shared the experiences during the workshops and presentations. Main topics: living with chronic disease, good practices exchange, how to improve patient self-management, how to foster patient cooperation, mentorship supervision.
We hope to develop a sustainable Celiac Disease Society service to improve quality of life of chronic patients.
Pilot project presenting screening school children in Croatia on celiac disease was the main topic that brought together GM Pharme Ltd. and the CD Association from Rijeka, at the meeting that was held in Zagreb on January 30th 2018, opening the possibility of future collaboration in raising awareness of CD in Croatia.
Sameer D. Saral, Chief Operating Officer, presented the company's work and it’s achievements in the field of diagnostics as well as the Biocard- the non-invasive rapid test for celiac disease that from a small sample of blood droplet gives the possibility to detect IgA antibodies within 10 minutes after testing.
Marina Milinović, the president of the Association of Celiac patients of Primorje and Gorski kotar County presented the European project “Focus in CD” as being the project’s manager, also the Association’s Pilot project – “Screening school children on celiac disease” and the current association’s activities.
All the present expressed great satisfaction with the screening of 1500 children on celiac disease in order to detect the early stage of the illness and to prevent serious medical complications.
The upcoming 5th Partners’ meeting of the “Focus in CD” project members, that will take place in Rijeka, Croatia, this June, was also announced with the invitation to GM Pharme Ltd. and Labsystems to take place as participant in thepublic event on Celiac disease education.
An education event devoted to mentors, who are helping new diagnosed celiac disease patients to better cope with chronic disease diagnose, will be organized in Maribor, in the frame of our pilot project on Saturday, 3rd February 2018, under the professional guidance of psychologist Jernej Vidmar. Mentors will gain new knowledge and share the experiences during our workshops and presentations. Main topics: living with chronic disease, good practices exchange, how to improve patient self-management, how to foster patient cooperation, mentorship supervision. We hope to improve quality of life of chronic patients.
If you have been diagnosed with celiac disease and are making the shift to gluten-free diet, your grocery shopping experience is going to change! Trying to follow a strict gluten-free diet can be overwhelming, and your first gluten-free shopping will be challenging; however, it will become easier over the time.
If you have just started eating gluten-free, you will be glad to know how to find safe gluten-free products, which products are naturally gluten-free, which may contain hidden gluten, how to organize your shopping, where you have to be careful and much more.
The most important part of gluten-free shopping for those following a strict gluten-free diet is reading and decoding the labels (the ingredients). We will provide you with some tips.
The best advice is coming from experienced celiac disease patients. Join us!
Radio SI reported about the efforts of Focus IN CD project to raise
awareness and improve the knowledge of HCPs and patients in Central Europe.
Focus IN CD is built on available knowledge from LQ - CELIAC, another celiac
disease related project to empower patients and to improve their
self-management as well as to educate all involved professionals.