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遗传性结直肠癌综合征登记处:是什么、如何运作以及为何设立?

Hereditary Colorectal Cancer Syndromes Registry: What, How, and Why?

作者信息

Abbass Mohammad Ali, Poylin Vitaliy, Strong Scott

机构信息

Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, Illinois.

出版信息

Clin Colon Rectal Surg. 2023 Jul 31;37(3):198-202. doi: 10.1055/s-0043-1770733. eCollection 2024 May.

Abstract

Caring for patients with colorectal cancer inherited cancer syndromes is complex, and it requires a well-thought integration process between a multidisciplinary team, an accessible database, and a registry coordinator. This requires an aligned vision between the administrative business team and the clinical team. Although we can manage most of the cancers that those patients develop according to oncologic guidance, the future risk of patients and their families might add emotional and psychological burdens on them in the absence of a well-qualified and trained team where balancing quality of life and cancer risk are at the essence of decision making.

摘要

照顾患有遗传性结直肠癌综合征的患者是一项复杂的工作,它需要多学科团队、可访问的数据库和登记协调员之间经过深思熟虑的整合过程。这需要行政业务团队和临床团队之间有一致的愿景。虽然我们可以根据肿瘤学指导来管理这些患者所患的大多数癌症,但在缺乏一支素质良好且训练有素的团队的情况下,患者及其家人未来的风险可能会给他们带来情感和心理负担,而在这样的团队中,平衡生活质量和癌症风险是决策的核心。

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