Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Programme 2014 - 2020 INTERREG VB Danube

Date of latest update: 2024-03-22

Description

Description (EN):

CD SKILLS project is addressing existing challenges of healthcare sector in Celiac disease (CD) management in the Danube region. CD is a lifelong systemic reaction against gluten found in wheat, barley and rye. It can occur at any age, but usually starts in early childhood. Women are affected twice as common as men. Without a very strict exclusion diet, severe complications can develop. More than 1% of population (about 1.2 million) in the Danube region could have CD, 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. This has important negative impact on sustainability of healthcare sector and society. Possible reasons are low awareness and knowledge about the disease, limited access to diagnostic tools, limited opportunities for innovative learning and inefficient information exchange. CD SKILLS aims to overcome these shortcomings to ensure sustainable public healthcare sector, which will efficiently meet health related and social needs of patients and general public affected by CD. Assessment of regional gaps in CD management will be followed by introduction of innovative learning strategy combining traditional lectures and modern e-tools, development of efficient disease detection strategies, and by innovative pilot services. Multisector transnational network will enable knowledge exchange. Project activities will raise the awareness, improve knowledge, skills and competences of all stakeholders involved in CD management, effectively improving the capacity of healthcare and social service in the Danube region. Project capitalizes on projects CE Focus IN CD and SI-HU LQ-CELIAC.

Achievements (EN):

BRIDGING KNOWLEDGE GAPS: AN INTERVIEW WITH JERNEJ DOLINŠEK, LEADING THE CD SKILLS PROJECT FOR COELIAC DISEASE MANAGEMENT: Three years ago, the CD Skills project embarked on a comprehensive journey that merged research, education, and international cooperation to address the complex challenges surrounding coeliac disease. At the helm of this transnational initiative is Jernej Dolinšek, Associate Professor of Pediatrics at the University Medical Centre in Maribor, Slovenia. Through meticulous analysis and dedicated efforts, the project unearthed startling revelations about the state of coeliac disease management, illuminating the need for a robust and holistic approach. In this interview, we gained a deeper understanding of the far-reaching impact of the CD Skills project on healthcare practitioners as well as patients, and how it managed to improve the coeliac disease management not only in the Danube region but also across the globe. 1. HOW HAVE THE PROJECT RESULTS BEEN USED? Overall, the project had a multifaceted approach, combining research, education, and collaboration to enhance coeliac disease management in the Danube region and beyond. The project started with an analysis of the current state of coeliac disease management in the Danube region, involving different countries. The results revealed significant gaps in knowledge and management practices within the region. There was a disconnect between what healthcare professionals were expected to know and what they actually knew about coeliac disease. Surprisingly, patients also had limited knowledge about their own disease, which hindered their ability to self-assess and adhere to treatment, particularly a gluten-free diet. The findings indicated that patient needs were substantial, and they were generally dissatisfied with the available medical care and gluten-free products, affecting their quality of life. Based on these results, the project worked on enhancing knowledge and tools for healthcare practitioners and patients. This involved updating e-learning resources, creating brochures, and improving diagnostic and follow-up tools for early and accurate recognition of coeliac disease. Several of these tools had initially been developed in previous projects funded under Interreg Central Europe but were now introducing new knowledge and were expanded to new languages due to the inclusion of new project partners. The languages now include English, Slovenian, Croatian, Italian, German, Hungarian, Czech, Romanian, Serbian, and a Bulgarian version in progress. An exchange platform was also established for healthcare practitioners to share patient stories and information on the best practices for managing patients with coeliac disease. The project disseminated its findings at various conferences, receiving positive reception beyond the Danube region. This led to the initiation of a significant international project involving many European centers and countries like New Zealand, Australia, the US, and Canada. In my opinion, the dissemination is crucial or the project results get lost otherwise. That's how we improve the knowledge, and improved knowledge is one of our most important result. 2. WHAT WERE THE MAIN OUTPUTS OF THE PROJECT IN SLOVENIA? (maybe it is possible answer by expanding the part mentioned in the answer to the first question about results, to give some examples from Slovenia): Several project outputs are very important for Slovenia. One is for sure a good insight into current management practice and knowledge about celiac disease. However more important are several publications, including a textbook for students who will be future healthcare providers and workshops where catering service providers gained important knowledge on how to prepare safe gluten free products for celiac disease patients. Very important outcome of the project is also the initiation of an international project on state of the art in celiac disease management called "CD in Focus" that is led by the team from Maribor, where countries form around the World are using the tools developed in the Danube region are used. 3. HAVE THE PROJECT RESULTS INFLUENCED POLICY DECISIONS OR LED TO ANY CHANGES IN THE FIELD? The project has not only generated valuable data but has also actively contributed to policy changes and improvements in the medical field. These changes encompass guidelines, and practical approaches that are being adopted by healthcare professionals, leading to a positive impact on patient care and healthcare efficiency. In Slovenia, Ministry of Health, also based on the activities of the project, is currently adopting a new legislation where it will define reimbursement scheme for adult patients with celiac disease who until now have not been entitled to any institutional incentives. We have been presenting our project's data to a wide array of professionals who are adopting them. Even if these changes are not yet formalized in legislation, they are being implemented in practice. Having project partners within decision-making bodies at the EU gastroenterology level, for example, allows for a direct channel to propose and advocate for changes based on the project's findings. In Slovenia, Ministry of Health, also based on the activities of the project, is currently adopting a new legislation where it will define reimbursement scheme for adult patients with celiac disease who until now have not been entitled to any institutional incentives. 4. WAS THERE ANY RESISTANCE OR CHALLENGES IN INCORPORATING THE PROJECT RESULTS INTO THEIR WORK? We had solid proof that there are shortcomings in the system, so there was no resistance. Quite contrary, I would say there was enthusiasm in up-taking results of our project in the medical field. 5. WHY DO YOU THINK INTERNATIONAL COOPERATION IS NECESSARY AND IMPORTANT FOR THE TOPIC YOU WERE SOLVING IN THE PROJECT? International cooperation was undeniably crucial for the success of our project. Throughout our collaboration with partners from various countries, we gained invaluable insights into their realities. It's remarkable how different approaches and challenges can be across different countries and regions. This diversity is important because it fosters a dynamic exchange of knowledge and best practices, enabling us to avoid the pitfalls and mistakes that others have encountered. Furthermore, our partners complemented each other brilliantly. While one excelled in results dissemination, another brought extensive clinical expertise to the table. One of the most significant benefits of this international cooperation was the ability to gather region-specific results. The project's discovery of shorter time intervals from first symptoms to diagnosis in the Danube region compared to other global regions is a crucial point. These findings have allowed us to share our knowledge with other parts of the world and this global reach has significantly increased the visibility of our region, which sometimes tends to be overshadowed by more developed Western or Nordic countries. Moreover, this collaboration has established a robust network for future initiatives that may arise from this network.

Website: http://www.interreg-danube.eu/

Expected Results (EN): Intensity of cooperation of key actors in the programme area in order to increase competences for business and social innovation (survey based composite indicator)

Expected Outputs (EN):

Main result of proposed project activities will be improved knowledge, skills, competences, and innovative potential of social services involved in Celiac disease management in the Danube region emphasising on the improved transnational and cross-disciplinary cooperation and increased capacities of healthcare sector to better meet health related and social needs of Celiac disease patients and other affected stakeholders. To achieve main result, project will be oriented towards achieving following results: Project result 1: ICT supported state of the art analysis of current CD management practices in the Danube region in at least 30 institutions. Through the capitalization on the results of the CE Focus IN CD project in depth analysis of many aspects of celiac disease management including clinical picture, diagnostic delays, availability of diagnostic tools, and compliance with management guidelines will be performed to identify existing differences and gaps as well as examples of good practice. Further activities will be based on results of this activity. Project result 2: Improved knowledge, skills, competences and innovative potential of healthcare professionals (HCPs), patients and other stakeholders in at least 30 institutions responsible for management of CD in the Danube region. Through the enhancement of transnational cooperation with establishment of information exchange network, and the use of innovative ICT supported learning strategies and diagnostic tools, capitalizing on lessons learned from Focus IN CD, knowledge, skills and competences needed for better management of CD will be improved. Project result 3: Six transnational innovative pilot services will focus on improved diagnostic capacity and on quality of life and healthy ageing of CD patients. Increased competences with increased innovative potential of stakeholders will enable development, implementation and testing of new services in the framework of pilot project activitities.

Thematic information

Health and social services

Specific Objective:

Increase competences for business and social innovation (short title). Foster innovative learning systems to increase competences of employees in the business sector, to strengthen entrepreneurial culture and learning contributing to better meet social needs and the delivery of services in the general interest

Thematic Objective: (01) strengthening research, technological development and innovation by:

Investment Priority:

(01b) promoting business investment in R&I, developing links and synergies between enterprises, research and development centres and the higher education sector, in particular promoting investment in product and service development, technology transfer, social innovation, eco-innovation, public service applications, demand stimulation, networking, clusters and open innovation through smart specialisation, and supporting technological and applied research, pilot lines, early product validation actions, advanced manufacturing capabilities and first production, in particular in key enabling technologies and diffusion of general purpose technologies

Partners (13)

Lead Partner: Univerzitetni klinični center Maribor

Department: Pediatric Department

Address: Ljubljanska ulica 5, 2000 Maribor, Slovenia

Legal status: public

Website: http://www.ukc-mb.si

Total budget: EUR 248 070.00

ERDF budget: EUR 210 859.50

Universitatea de Stat de Medicină şi Farmacie „Nicolae Testemiţanu" din Republica Moldova

Name: Universitatea de Stat de Medicină şi Farmacie „Nicolae Testemiţanu" din Republica Moldova

Department: Pediatric Department

Address: bd. Ştefan cel Mare şi Sfânt 165Chişinău, Moldova

Legal status: public

Website: https://usmf.md/ro

Total budget: EUR 96 180.00

CeliVita - Život s celijakijom

Name: CeliVita - Život s celijakijom

Address: Strojarska ulica 26, 10000 Zagreb, Croatia

Legal status: private

Website: http://www.celivita.hr

Total budget: EUR 62 310.00

ERDF budget: EUR 52 963.50

Univerzitetska dečja klinika

Name: Univerzitetska dečja klinika

Department: Department of Gastroenterology, Hepatology and Nutritional Disorders

Address: Tirsova 10, 11000 Beograd, Serbia

Legal status: public

Website: http://www.tirsova.rs

Total budget: EUR 58 000.00

IPA2 budget: EUR 49 300.00

Udruzenje Srbije za celijakiju

Name: Udruzenje Srbije za celijakiju

Address: Vidska 1d/11, 11000 Beograd, Serbia

Legal status: private

Website: http://www.celijakija.rs

Total budget: EUR 30 000.00

IPA2 budget: EUR 25 500.00

Mestna občina Maribor

Name: Mestna občina Maribor

Department: Project development office

Address: Ulica heroja Staneta 1, 2000 Maribor, Slovenia

Legal status: public

Website: http://www.maribor.si

Total budget: EUR 169 760.00

ERDF budget: EUR 144 296.00

Institutul National pentru Sanatatea Mamei si Copilului Alessandrescu-Rusescu

Name: Institutul National pentru Sanatatea Mamei si Copilului Alessandrescu-Rusescu

Department: Department of Paediatrics

Address: Bdv. Lacul Tei 120, 020395 Bucharest, Romania

Legal status: public

Website: http://www.insmc.ro

Total budget: EUR 169 560.00

ERDF budget: EUR 144 126.00

Klinika za dječje bolesti Zagreb

Name: Klinika za dječje bolesti Zagreb

Department: Referral Center for Pediatric Gastroenterology and Nutrition

Address: Klaiceva 16, 10000 Zagreb, Croatia

Legal status: public

Website: http://www.kdb.hr

Total budget: EUR 155 270.00

ERDF budget: EUR 131 979.50

Medizinische Universität Graz

Name: Medizinische Universität Graz

Department: Department of Paediatrics and Adolescence Medicine

Address: Auenbruggerplatz 2, 8036 Graz, Austria

Legal status: public

Website: http://www.kinderklinik.uniklinikumgraz.at

Total budget: EUR 153 060.00

ERDF budget: EUR 130 101.00

Všeobecná fakultní nemocnice v Praze

Name: Všeobecná fakultní nemocnice v Praze

Department: Department of Pediatrics and Adolescent Medcine

Address: U Nemocnice 499/2, 12808 Praha 2, Czech Republic

Legal status: public

Website: http://www.vfn.cz

Total budget: EUR 132 080.00

ERDF budget: EUR 112 268.00

Heim Pal Orszagos Gyermekgyogyaszati Intezet

Name: Heim Pal Orszagos Gyermekgyogyaszati Intezet

Department: Coeliac Disease Centre

Address: Ulloi ut. 86, 1089 Budapest, Hungary

Legal status: public

Website: http://www.heimpalkorhaz.hu

Total budget: EUR 128 480.00

ERDF budget: EUR 109 208.00

LMU Klinikum der Universität München, Kinderklinik und Kinderpoliklinik Dr. von Haunersches Kinderspital

Name: LMU Klinikum der Universität München, Kinderklinik und Kinderpoliklinik Dr. von Haunersches Kinderspital

Department: Department of Paediatrics

Address: Lindwurmstraße 4, 80337 München, Germany

Legal status: public

Website: http://www.lmu-klinikum.de

Total budget: EUR 125 130.00

ERDF budget: EUR 106 360.50

Debreceni Egyetem

Name: Debreceni Egyetem

Department: Medical Faculty, Department of Paediatrics, Coeliac Disease Study Group

Address: Egyetem ter 1, 4032 Debrecen, Hungary

Legal status: public

Website: http://www.unideb.hu

Total budget: EUR 112 210.00

ERDF budget: EUR 95 378.50

Partners map

Partners and Projects info

University Medical Center Maribor

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

“Nicolae Testemitanu” State University of Medicine and Pharmacy of the Republic of Moldova, Kishinau

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

CeliVita - Living with Celiac Disease

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

University Children's Hospital

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

Serbian Coeliac Society

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

Mestna občina

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

National Institute for Mother and Child Health Alessandrescu-Rusescu

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

Children's Hospital Zagreb

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

Medical University of Graz

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

General University Hospital in Prague

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

Heim Pal National Paediatric Institute

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

LMU University Hospital Munich, Dr. von Hauner Children's Hospital

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Partners and Projects info

Debreceni Egyetem

Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Lead partner

Project partner

Summary

Project name (EN): Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Project acronym: CD SKILLS

Project start date: 2020-07-01

Project end date: 2022-12-31

Project status: closed

Total budget/expenditure: EUR 1 640 110.00

Total EU funding (amount): EUR 1 394 093.50

Co-financing sources:

ERDF: Amount, EUR 1 237 540.50.
IPA/IPA II/IPA III: Amount, EUR 74 800.00.

Information regarding the data in keep.eu on the programme financing this project

Financing programme

2014 - 2020 INTERREG VB Danube

Last month that data in keep.eu was retrieved from the Programme's website or received from the Programme

2023-09-22

No. of projects in keep.eu / Total no. of projects (% of projects in keep.eu)

155 / 155 (100%)

No. of project partnerships in keep.eu / Total no. of project partnerships (% of project partnerships in keep.eu)

1 582 / 1 582 (100%)

Notes on the data

Information provided by the Programme. Achievements were retrieved by Interact from the Programme website (http://www.interreg-danube.eu/), or a website directly linked from it, on 2021-10-06, 2023-01-10 and 2024-01-30.

The financial data featured in keep.eu for this programme, it's projects and its partners is not exact and should be taken as a reference only.

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Improving celiac disease management in the Danube region by raising the awareness, improving the knowledge, and developing better skills

Description

Thematic information

Partners (13)

Partners map

Summary

Information regarding the data in keep.eu on the programme financing this project

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