HEREDITARY COLORECTAL CANCER: EXPERIENCE FROM TRYING TO CREATE THE FIRST ELECTRONIC REGISTRY IN ROMANIA.

Introduction. Hereditary colorectal cancer (HCRC) syndromes represent a relatively diverse group of disorders that exhibit different patterns of inheritance. We aim to create the first registry of this type for this category of patients in order for them to have access to better healthcare and to give them a new perspective Keyword: colorectal cancer, hereditary syndromes, cancer registry Materials and Methods. We started collecting data since August 2021. We made an extensive examination consisting of personal infromation and important clinical data. All patients introduced in the study had lower and upper GI examinations performed, and also CT exams when indicated by guidelines. For Lynch Syndrome we used the Amsterdam and Bethesda criteria, while for familial adenomatous polyposis syndrome we combined the colonoscopy results with family history. We also collected family information in order to be able to perform screening testing for them depending on their respective syndrome. Results. We managed to introduce 26 patients that have either a genetic, histological or clinical diagnosis. Out of these, some are only family members that haven't been genetically tested and aren't diagnosed yet, but still have to be followed. We have 22 index patients, and are currently actively following other family members at high risk. We have 6 Lynch Syndrome families, 2 Peutz-Jeghers families, 3 Attenuated FAP Syndrome families, 2 MAP families, 7 FAP families and one Juvenile polyposis syndrome family with a sex distribution male to female of 9:17, (34.61% male, 65.39% female). Both patients with MAP have had genetic testing done, and also the Juvenile polyposis patient. Currently, family members are being introduced into the study in order to perform screening examinations according to guidelines and create an efficient timetable that can help prevent complications and diagnosis of advanced tumours. Conclusion. While challenging, it is clear that there is an urgent need for an electronic registry in order to offer this category of pacients a better life expectancy and a better quality of life. [ABSTRACT FROM AUTHOR]