Families or individuals with proven or suspected hereditary colorectal cancer will be interviewed. Family trees (also called pedigrees) of these families are formulated and constantly updated. A database is kept for medical information and screening/surveillance record of all recruited family members.
Genetic diagnosis and genetic-guided screening programme The Registry provides genetic diagnosis of various hereditary colorectal cancer syndromes including familial adenomatous polyposis (FAP), Lynch syndrome (LS, previously called hereditary non-polyposis colorectal cancer [HNPCC]) and Peutz Jegher’s syndrome. Based on the available clinical and genetic information, the Registry will formulate and organize an individual-tailored screening programme for each at-risk family member. Work-flow of this programme is as follows:
Counseling and psychosocial support
The Registry provides genetic counseling both before and after genetic testing of eligible members. Our psychosocial support programme helps recruits adapt to their hereditary condition and lead fruitful lives.
The Registry aims to educate both the healthcare profession and the general public about hereditary colorectal cancer to ensure proper referral.
Moreover, regular educational activities are organized for recruited members to increase their understanding of hereditary colorectal cancer syndromes and to optimize their adherence to surveillance programme.
The Registry has been active in clinical, psychosocial and molecular genetic researches to enhance the understanding and clinical management of hereditary colorectal cancers.
Results of its research work have been widely published as original articles in refereed international medical journals.
The Registry is a member of the International Society for Gastrointestinal Hereditary Tumours.
Through international meeting and collaborative research effort, the Registry aims at exchanging information and participating in international multicentre studies.