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The establishment of a polyposis register
1Danish Polyposis Register, Department of Surgical Gastroenterology, Hvidovre Hospital, University of Copenhagen.
Insights
Establishing national and regional registers for familial adenomatous polyposis (FAP) is crucial. These registers aid in identifying at-risk individuals and ensuring timely screening for FAP patients.
Area of Science:
- Gastroenterology
- Genetics
- Public Health
Background:
- Familial adenomatous polyposis (FAP) is a hereditary condition predisposing individuals to colorectal cancer.
- Effective management requires systematic identification and monitoring of affected families.
Purpose of the Study:
- To provide guidelines for establishing national and regional registers for FAP patients.
- To outline the aims, development stages, and data confidentiality considerations for FAP registers.
Main Methods:
- Recommendations developed by the Leeds Castle Polyposis Group and EuroFAP committees.
- Review of key stages: proband ascertainment, pedigree construction, risk identification, and screening.
- Discussion of data confidentiality challenges.
Main Results:
- Detailed recommendations for FAP register establishment are presented.
- The process involves systematic patient identification, family tracing, and risk assessment.
- Data confidentiality is a critical aspect to address.
Conclusions:
- National and regional FAP registers are essential for comprehensive patient management.
- Structured approaches to ascertainment, pedigree analysis, and screening are vital.
- Addressing data privacy is paramount for successful register implementation.
Abstract:
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.