THE ESTABLISHMENT OF A POLYPOSIS REGISTER

Guidelines are presented for the establishment of a regional or nation al register of patients with familial adenomatous polyposis. The detai led recommendations are based on the work in committees of the ''Leeds Castle Polyposis Group'' and the ''EuroFAP''. The aims of national an d regional polyposis registers are discussed, and the stages of develo pment of a register are reviewed: Ascertainment of probands, construct ion of pedigrees, identification of family members at risk, and screen ing of members at risk. The problem of data confidentiality is discuss ed.