Celiac disease in Slovenia University medical centre Maribor

Celiac disease in Slovenia University medical centre Maribor Dušanka Mičetić-Turk, Miro Palfy, Jernej Dolinšek

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National task forces Proposed National Celiac Disease Task Force National Co-ordinator Prof. Dušanka Mičetić-Turk, MD, Ph. D Styria: Jernej Dolinšek, MD, Ph. D Miroslav Palfy, Ph. D Ksenija Kozorog, MD Central Slovenia: Jernej Brecelj, MD Rado Janša, MD Coastal region: Ivica Smajla, MD Carniola: Jasna Wolfand, MD Lower Carniola: Lidija Žalec, MD Carinthia: Ljuba Gangl, MD

Building national task forces: how it is composed and which are the plans a) State of the art in the training and dissemination at national level 1. 14 days Training course in CD for young doctors during pediatric training 2. Life long learning in CD – half day course on etiology, epidemiology, clinical picture, diagnostics and treatment of CD (general practitioners, nutritionists, nurses, pediatricians, internal medicine gastroenterologists, psychologists, pathologists, biochemists) 3. Undergraduate and postgraduate education at University of Maribor, Ljubljana, Koper and Politechnic health schools 4. Publication on the field of CD in national health journals, congress proceedings, professional articles in publications of Slovene Celiac Society, and articles in national media (newspapers, TV, radio, interviews with experts) addressing general population 5. Informational material (books, brochures, newsletters, pamphlets, dietary guidelines, web based material) 6. Internet publications at Slovene Celiac Society web page

Building national task forces: how it is composed and which are the plans • Work with Institution and Professional Societies 1. Work with Ministry of health in adopting programs for improving Qo. L of celiac patients on national level 2. Co-operation with National Health Insurance: rehabilitation programs for children and adults 3. Co-operation with National Institute for Public Health 4. Supervising of Slovene Celiac Society

Building national task forces: how it is composed and which are the plans • Dissemination tailored to the General Practitioners 1. Lectures at national medical congresses, symposia and meetings (mostly concerning gastroenterology, pediatrics, internal medicine, dermatology, nutrition, general practice, and family medicine) 2. Invited lectures at different medical and educational institutions 3. Invited lectures organized by pharmaceutical and nutritional industry 4. Organized lectures and meetings for allied health professionals (nutritionists, clinical dietitians), and education and other professionals working with preschool and school children, as well as students

The Diagnostic guidelines a) How they are applicable in your country – – a) ESPGHAN guidelines are fully applied in Slovenia. Diagnosis is in majority of cases confirmed with small bowel biopsy. New diagnostic tools are immediately applied in routine practice in major laboratories. Almost all patients coming from NE Slovenia have also been genetically tested. The status of your contribution to the retrospective study

Starting a pilot study in the field far from reference centers a) Have you considered a geographically limited field where such study could be planned? We have already planned such a study. Since Slovenia is rather small country with good road and railway connections this will not be hard logistically to organize. Pomurje region (plain region along the Mura river between Austria, Hungary and Croatia – about 60 -100 km from Maribor – main celiac center) is a region where CD is still underdiagnosed, and is lacking from our network. Therefore the first pilot study will be done in this geographic area. a) Have you considered the logistic of such a study?

The Celiac Risk Factors : genetics and environment a) Have you ever collected biological samples from families? Yes. We always screen all family members genetically and serologically in University Medical Centre Maribor. There is an initiative to do the same in all other regional medical centers, too. b) Do you have DNA stored? Yes. In University Medical Centre Maribor, Genetic laboratory. c) Would you participate to a Mediterranean bank of families, in order to study genetic risk factors? Yes.

“Helping Coeliac” a program across the Mediterraneum a) What is the progress of the Celiac Association in your country? Slovene Celiac Society was established in 1988 in Maribor, where it still has it domicile. In this period the complete network of regional celiac branches was developed. In this way the health care for celiac patients is on the same level in whole country, this means diagnostic procedures and the treatment, as well as socio-economic care for patients is equally dispersed. Slovene society is under the professional supervision of Expert board, consisting of specialists with the experience in CD. It is also a strong member of AOECS. a) What do you need as support from ‘Helping the Celiacs’ by AOECS?

Gluten Free Diet a) The situation of the gluten free diet in Slovenia, in relation to cultural and traditional attitudes – – Major gluten-free companies from Europe are present on Slovene market, as well as some minor local producers. Traditional naturally gluten free foods are: potatoes, corn, buckwheat