The Celiac Disease Registry was launched to record data on celiac patients and to compile data on epidemiology, clinical symptoms, complications, inheritance pattern, and dietary questions related to celiac disease. The registry provides a strong opportunity for aggregating data on Hungarian celiac patients and accelerates international research. Six Hungarian centres have already joined the Celiac Disease Registry since it was established.
The registry was founded with the purpose of helping to advance celiac disease research by maintaining a reliable, accurate, and continuous reporting system on national occurrence, diagnostics, characteristics, co-morbidities, and extraintestinal manifestations of celiac disease. Data collected through the registry contribute to the precise detection of trends in clinical parameters and complications. The questionnaire offers a practical guide for clinical practitioners to manage and follow up patients by enhancing accurate data recording. An analysis of blood and tissue samples supplies further information on disease genetics and pathophysiology, as well as the effects of a gluten-free diet. Prospective and retrospective data can be uploaded on newly diagnosed and followed-up celiac patients, independently of age, by in- and outpatient clinics at health facilities legally authorized to provide medical care. Centres can upload data on medical history, signs and symptoms, and tests based on medical indication. Blood and urine samples will be transferred to the Biobank. Blood sampling is only permitted if recommended by a clinical practitioner based on medical indication. Detailed information must be supplied to research participants, and an informed consent for registry participation must be obtained before uploading data to the registry. The patient information leaflet and the informed consent form can be downloaded from our website under ‘Celiac Disease Registry/Forms’.