OUR MASCOT... Boo? No, just Bu.

Why do we have a monster as our mascot, you might ask?

Let's be honest. Although Bu poses as a monster, he's far from being one! He might try to make himself tall by raising his arms, he might make his big eyes wider, he can show his teeth and even give a haunting noise a go – but trying as hard as he might, he just isn't scary! He is way too tame and way too shy. In posing as a dreadful monster, he is pretty pathetic and even kind of cute. So we take him for what he is and accept him without fear.

INTRODUCTION

Partners of the CD SKILLS project financed by the Interreg Danube Transnational Programme have been very active during the first half of 2021. Assessment of the current state of the art in the celiac disease management in the region started at the beginning of the period and preliminary results already show the improvement in the diagnostic approach. Further analysis of the data will show the current status of awareness, knowledge and needs about the disease in the Danube region. New diagnostic methods for celiac disease were improved and will be tested in real environment. A possibility to get reliable results of specific coeliac disease testing within the visit time of a patient with a new analytical tool is very promising and first results already show the advantages of this possibility. Despite the limitations in international travel brought by SARS-CoV-2 epidemic, several local and international educational activities were conducted. Interesting patient stories were continually presented and discussed by partnership with the help of communication platform. Another activity focusing on improving the knowledge about coeliac disease was updating of e-learning tools developed in previous project.These tools are being adapted and will be translated in new languages within the next period. Partners were active at international meeting including the World Congress of Paediatric Gastroenterology, Hepatology and Nutrition which was held virtually. Several partners actively participated as speakers at this meeting. Parners also continued their work in the development of pilot services. They were meeting on a monthly basis and established specific stakeholder groups and developed a workplan for each of the seven pilot projects. Some of these projects will start shortly and initial results will be presented within the next period. Achievements of the project and facts about the burden of coeliac disease were widely disseminated during the May to mark the International Coeliac disease day. Two publications which will serve to improve the knowledge of healthcare professionals and patients were finalized during this period, and will be published shortly in partner languages. English versions are already available at our web-site, which also features several other interesting publications and provides interested readers with further information about celiac disease and about the partnership which will hopefully be enlarged by a new partner from Germany befor the Summer. We are kindly inviting you to read this newsletter and visit our web-page and help us in rising the awareness about the celiac disease in the Danube region.

Assessing current state of the art in the management of celiac disease (WPT1)

A new BLItz Technology-based instrument arrived to Heim Pál National Paediatric Institute to assist near-patient quantitative measurement of celiac antibodies

The Celiac Disease Center at Heim Pál National Paediatric Institute, Budapest has received with the support of the CD SKILLS project (Interreg DTP) a new laboratory instrument utilizing novel biolayer-interferometry technology. The machine is placed to the outpatient department and will be employed to detect celiac antibodies and serum IgA from a drop of blood. The measurement setting is being developed by the transglutaminase research group of the University of Debrecen, another CD SKILLS partner. The BLItz Technology is based on the optical measurement of antibody binding to a plastic biosensor coated with target molecules, like gliadin or transglutaminase, and is able to give results in few minutes onsite.

Building knowledge capacities (WPT3)

Pilot projects news (WPT4)

Within thematic work package 4 “Pilot projects” partners are designing innovative pilot services based on identified needs and challenges, recorded inequalities, knowledge and management practice gaps, stakeholders’ demands, input from partners and lessons learned from previous projects (CE Focus IN CD, SI-HU LQ-CELIAC, FP7 CD-MEDICS). There are seven pilot services aiming to improve public healthcare services and quality of life of celiac disease patients. For each pilot service a preliminary activities list was established. Testing for Celiac disease in general population, risk groups and elderly This pilot focuses on the presence of undiagnosed celiac disease (CD) in the general population and especially in the underprivileged groups of the population. Within the pilot, the partners will be screening specific populations with rapid celiac disease tests. We are gathering data from each contributing partner regarding the scale of testing and the populations to be tested. After gathering all these data, we will decide on the rapid test(s) that will be used in this pilot study. Since there is a higher chance of another lockdown in autumn and winter months, there is a sense of urgency for all partners to do their testing before that time. Testing for Celiac disease related complications Complications related to CD are extremely important. Undetected or untreated CD patients are exposed to risk for development of serious complications including osteoporosis, thyroid disease, anaemia, infertility, etc. The aim of the pilot is to evaluate the frequency of complications related to celiac disease and to develop recommendations for approach to a newly diagnosed patient with celiac disease in order to diagnose hidden complications and their treatment and follow-up in the management of patients with celiac disease, all in correlation with compliance with gluten-free diet. ICT supported histopathology analysis of biopsy samples Inadequate histopathology analysis of small bowel biopsy samples and/or misinterpreted results can lead to wrong diagnoses of celiac disease. One of the methods that could improve and facilitate the biopsy based diagnostic procedure is ICT supported histopathology analysis of biopsy samples that will be compared to traditional methods. In order to improve knowledge and share ideas and experiences, the partners involved in the pilot are preparing a common workshop with clinicians and histopathology experts.4 / 10 Programme co-funded by the European Union Patient registry set-up Across the Danube region, there is lack of good quality, standardized data regarding celiac disease patients. In this pilot we aim to develop a common patient registry structure. Patient registries would enable the collection and analysis of data for epidemiology, clinical presentation and characteristics of the disease, diagnostics, associated disease, complications and treatment. It would serve as the basis not only for future medical research programs but also for public health plans and actions. This all together will improve the health care and the quality of life of patients with celiac disease. The partners agreed on the aligned content of the patient registry and are currently analysing the technical approach to be used. Monitoring of celiac disease patients with telemedicine solutions In this pilot the focus will be testing and implementing different telemedicine solutions to improve the quality of regular check-ups for patients with celiac disease during a pandemic, while at the same time minimizing the physical contacts where patients could get infected. The partners involved had an online meeting where we discussed the scope of this pilot and decided on some basic ideas. The pilot leader is already gathering information about the different technical solutions and also a possibility of an additional software support for our pilot (maybe even a specific app for a smartphone). Development and implementation of gluten-free products registry Gluten-free(GF) products registry will be a solution which will serve not only to coeliac patients, but to everybody preparing strict GF food, providing correct and up to date information about gluten free products. GF products registry will be developed as a user friendly and easy to use application. Pilot project will enable us to produce a beta version of the registry which will be easily maintained by societies and used by end users. We expect this pilot to be motivation for the food producers to, more carefully, precisely and at one place, communicate information about food they produce to final consumers, when it comes to presence/absence of gluten in the food. Improved capacity of food catering providers to provide safe gluten free products The main aim of this pilot is to develop, implement and test new comprehensive supportive education model including lectures, workshops, education material, gluten-free legislation frame and longterm support to improve capacities of food caterers in a way they will understand basic rules and prerequisites of gluten-free meal preparation. Now, focus in this pilot project is on individual workshops with specific stakeholders. We hope to get information that will help us produce quality content for the end users-caterers and others in charge of food preparation in school and kindergarten kitchens, dormitories, hospitals, elderly homes etc. Inputs from stakeholders will show us where the knowledge and information gaps are, so that we can produce and offer specific and useful materials which will be used for building their capacities. Materials and relevant information in various formats will be placed at a common online platform.

Communication work package news (WPC)

Due to pandemic crisis, we have not been able to organize face to face meetings and events, to participate at conferences and to travel to meetings in this project period, all these activities have been organized online. We have put a lot of efforts to prepare quality publications to support patients and healthcare professionals to gain new knowledge about celiac disease. A transnational campaign to mark International celiac disease day was organized, we have published a press release and organized as well as participated at different events to spread the knowledge and to raise awareness. Project partners designed a general promotion material up to their needs to support newly diagnosed patients, to promote pilot activities, the project and the DTP programme. We have been very active at our website and digital profiles, we regularly published news and attracted as many visitors as possible, namely rising awareness and improving the knowledge as well as the quality of life of celiac disease patients are our main aims. Our patient stories were a real success. 

A guide to living with celiac disease

If have been diagnosed with coeliac disease and you have to change to a gluten-free diet, which will enable you to control your health, we have published a “A guide to living with celiac disease” which will provide you with information about coeliac disease, its symptoms, diagnostic methods and treatment, the importance of dietary adherence and regular follow-up as well as the recommended screening of family members. It will offer you guidance about living a gluten-free life, about changes in your lifestyle, where to find necessary information, patient support, and answers to your questions. Using this guide, you will find that eating, cooking and travelling gluten-free can be easy. Our tips will help you to transform your kitchen into a gluten-free zone or at least into a safe environment where the risk of gluten contamination is minimized. We recommend you to watch our “Gluten-free kitchen” video tutorial, available at our project website http://dtp.interreg-danube.eu/approved-projects/cd-skills. You will find a detailed gluten-free bread recipe and some gluten-free shopping tips. A guide to living with celiac disease is available at: http://dtp.interreg-danube.eu/uploads/media/approved_project_output/0001/45/998c62d71d1e3aac4a32e241ca6b43458f49a183.pdf 

Hand in hand with celiac disease

Coeliac disease is a lifelong systemic reaction against gluten found in wheat, barley and rye. More than 1% of population (about 1.2 million) in the Danube region could have coeliac disease, with much larger population affected indirectly. It has an impact on families and friends, as well as on childcare institutions, food producers, catering service, and especially on healthcare sector. About 80% of patients are diagnosed with long delay or remain undiagnosed, increasing a risk of complications, resulting in high morbidity and mortality, low school performance and high work absenteeism. The main long-term goals of the project are improvement of the knowledge, skills and competences of health care professionals and patients as well as other stakeholders and increased capacity of healthcare service in the Danube region to better meet the needs of coeliac disease patients and to improve their quality of life. Our brochure to support health care professionals will get us closer to the set-up goals. Hand in hand with celiac disease is available at: http://dtp.interreg-danube.eu/uploads/media/approved_project_output/0001/45/d9160462ee259b35e1939c6530b07683eb50d190.pdf