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.
E-brochure for newly diagnosed patients (click for download)
To the health of patients with coeliac disease even the smallest mistakes and contamination of the gluten-free products can be harmful.
In order to ensure a safe, strict gluten-free diet it is important to buy gluten-free products, but also to store and prepare them properly to be able to produce a real gluten-free meal as a result. To help with tips and suggestions on how to prepare the kitchen surfaces and rearrange the articles in the kitchen, check the “Gluten- free Kitchen” video:
ICT application for doctors
E-learning tool for HealTh Care Practitioners
10 pilot projects
E-LEARNING TOOL FOR patients
Assessment of Celiac Disease management practices
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.
On 19th May 2018, the German partners held its national campaign at the celebrations of the World-Celiac-Day which is organized by the German Celiac Disease Patient’s Society (DZG). Approximately 4000 people with celiac disease, their family members and professionals working in celiac disease participated in this entertaining and informative event with several activities, stage programme and gluten-free food corners.
Focus in CD was involved with 3 different activities: first, our celiac disease movie was shown to the public for the first time followed by a short overview of the Focus IN CD at the main Open-Air-stage. In the scientific programme, a more extensive presentation with first results and outcomes of Focus IN CD was given, approximately 150 people participated. Last but not least, we got in direct contact and exchange with the participants at the Focus IN CD info desk in the exibition area, including a live demonstration of our e-learning for patient‘s for which we received very positive feedback.
At the traditional pediatricians meeting of Primorsko-goranska, Istarska and Licko-senjska County that was held in Buzet from 8th June to 9th June, we paid special attention to the celiac disease and the Focus IN CD project.
We presented the data about the knowledge and awareness about celiac disease among health care professionals in Croatia, with the main aim to improve the knowledge of the participants which is often insufficient and should be improved.
About 50 pediatricians from three counties took part in the meeting. A copy of the celiac disease brochure for HCPs, prepared in the framework of the project, was presented and distributed to all participants. The brochure is also available electronically on the Focus IN CD website.
Marina Milinović , Croatian Celiac Society Society president and prof. Goran Palčevski from University Hospital Rijeka, held a central meeting with primary school principals of Primorje - Gorski Kotar County at Primary School "Ivan Rabljanin" on 24th May 2018 in Rab. They presented Focus IN CD project activities and the main purpose of rapid testing on celiac disease. The main goal was to present the pilot activity »Testing for celiac disease antibodies in children« to principals and to encourage them to cooperate in this preventive health care program.
After that, school principals expressed their interest to prepare an official written document about this topic and to include them into the curriculum for the next school year, in open discussion.
Future cooperation is expected in the autumn 2018, when the presentations for parents will be held and the Pilot Project is planned to be implemented.
Cultural Information Center Gospić and Club "Tuesdays for Health", which informs the public about various health problems and preventive programs, invited the Croatian Celiac Society to inform citizens about celiac disease and FOCUS IN CD project.
Presenters were Marina Milinović and Marijana Smoljan, who exposed celiac disease topics, today’s patient needs and expectations, gluten influence and digestive system difficulties. General public was informed about Focus in CD project, its main goals and achievements and also about the pilot activity and efforts to test the general children's population on celiac disease.
"Raising awareness and a public discussion about programs which are able to prevent many other health complications are important factors, that will help to establish an effective health system", were the topics stressed in closing words.
After lectures a gluten free backing workshop was organized. Society members prepared gluten free bread for public degustation.
Ms. Marina Milinović and Ms. Marijana Smoljan, Croatian Celiac Disease Society representatives from Rijeka, met Mr. Zvonimir Šostar, director of Public Health Institution "Dr. Andrija Štampar" from Zagreb in order to foster joint cooperation, on 6th April 2018.
Society will perform rapid testing of 1500 pre-school children on celiac disease in the frame of Focus IN CD pilot activity. Croatian Public Health Institution will also test about 2000 children, so they agreed about information and data exchange.
Such a large sample of preschool children will be tested in Croatia for the first time.
The Association and the Public Health Institution have the same goals: early diagnosis and prevention of other related diseases. The results of these studies will serve as a basis for the preparation of new recommendations for celiac disease management.
Both institutions agreed that celiac disease patients should have more comprehensive health care treatment. Non diagnosed or misdiagnosed patients have severe complications with associated diseases. The health care system should address the issue of cost-effectiveness of patient treatment in relation to investment in preventive programs.
Due to this meeting first steps into this direction were made.
Focus IN CD partners attended 51st ESPGHAN Annual Meeting in Geneva last week.
More than 4500 health care professionals from over 100 countries attended the meeting this year making this the most important global event of pediatric gastroenterology, hepatology and nutrition.
Members of the Focus IN CD project partners were very active during the meeting. They presented outcomes of the project at the ESPGHAN Special Interest Group meeting to participants with special interest for celiac disease. Some of the outcomes were also presented as posters to all participants of the Annual meeting. One of the posters got a Poster of distinction award. Partners were also very active in other events addressing coeliac disease with lectures and discussions in working groups.
Strong interest to broaden the use of tools developed in the project outside Central Europe to all European countries and USA was expressed by leaders of major centers of excellence, which proves that the work we are doing with Focus IN CD project in Central Europe is being recognized by experts around the world.
Focus IN CD project is supporting ESPGHAN (The European Society for Paediatric Gastroenterology Hepatology and Nutrition) and AOECS (The Association of European Coeliac Societies) efforts to promote the celiac disease awareness day and to spread the knowledge about celiac disease.
16 May 2018 will mark International Coeliac Day 2018, which focuses on raising awareness of the condition amongst both members of the public and healthcare professionals. Coeliac disease is the most common food-related chronic disease among children in Europe, with prevalence rising in recent decades. However, up to 80% of coeliac disease cases remain undiagnosed in children, which can lead to many serious association health complications.
ESPGHAN and the AOECS are therefore calling on the EU and its Member States to employ effective detection programmes to achieve early diagnosis of coeliac disease in children.
The two societies have come together to produce a manifesto for change, outlining three steps that must be taken throughout Europe to promote earlier diagnosis:
1. Greater public awareness of paediatric coeliac disease
2. Greater healthcare professional awareness of coeliac disease, its symptoms and the high-risk groups
3. Establishment of national detection programmes for early identification of paediatric coeliac disease
We would like to invite you to join us in calling for this change on 16 May 2018. We would be delighted if you were able to share the manifesto on your website, communication or social channels, along with an infographic on paediatric coeliac disease across Europe