PROJECT SUMMARY

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.

1

E-brochure for newly diagnosed patients (click for download)

Living with CD

How to set up a safe gluten-free kitchen?


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:


Project outputs

ICT application for doctors

E-learning tool for HealTh Care Practitioners

Policy recommendations

10 pilot projects

E-LEARNING TOOL FOR patients

Assessment of Celiac Disease management practices

FOCUS ON CELIAC DISEASE – PATIENT CENTRED CELIAC DISEASE MANAGEMENT

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.

Focus on Celiac Disease – patient centred celiac disease management

 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.

E-guidelines protocol of celiac disease treatment.pdf

PROJECT NEWS

19.05.2018

News

World Celiac Day

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.


World Celiac Day

24.05.2018

News

PILOT PROJECT - "TESTING SCHOOL CHILDREN ON CELIAC DISEASE" PRESENTED TO PRIMARY SCHOOL PRINCIPALS on Rab

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.


PILOT PROJECT -

16.5.2018

News

CELIAC DISEASE AWARENESS DAY

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

PROJECT IN NUMBERS

0

PARTNERS

0

TOOLS

0

PILOT PROJECTS

0

POLICY RECOMMENDATION

project duration

Start Date

June 2016

End Date

may 2019

contacts

Newsletter Registration