Bülow S, Burn J, Neale K, Northover J, Vasen H
Danish Polyposis Register, Department of Surgical Gastroenterology, Hvidovre Hospital, University of Copenhagen.
Int J Colorectal Dis. 1993 Mar;8(1):34-8. doi: 10.1007/BF00341274.
Guidelines are presented for the establishment of a regional or national register of patients with familial adenomatous polyposis. The detailed recommendations are based on the work in committees of the "Leeds Castle Polyposis Group" and the "EuroFAP". The aims of national and regional polyposis registers are discussed, and the stages of development of a register are reviewed: Ascertainment of probands, construction of pedigrees, identification of family members at risk, and screening of members at risk. The problem of data confidentiality is discussed.
本文提出了建立家族性腺瘤性息肉病患者区域或国家登记册的指南。详细建议基于“利兹城堡息肉病小组”和“欧洲家族性腺瘤性息肉病（EuroFAP）”委员会的工作。讨论了国家和区域息肉病登记册的目标，并回顾了登记册的发展阶段：先证者的确定、家系构建、识别有风险的家庭成员以及对有风险的成员进行筛查。还讨论了数据保密问题。
