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The International Collaborative Group on HNPCC
H F Vasen1, J P Mecklin, P M Khan
1The Netherlands Foundation for the Detection of Hereditary Tumours, Utrecht/Leiden.
Insights
The International Collaborative Group on Hereditary Non-Polyposis Colorectal Cancer (HNPCC) successfully met its initial goals. Increased awareness and the potential for DNA testing in HNPCC management were key outcomes.
Area of Science:
- Oncology
- Genetics
- Public Health
Background:
- The International Collaborative Group on Hereditary Non-Polyposis Colorectal Cancer (ICG-HNPCC) was founded in 1989.
- HNPCC is a significant hereditary cancer syndrome with implications for patient management and genetic counseling.
Purpose of the Study:
- To establish minimal criteria for HNPCC identification and standardize collaborative research.
- To enhance patient and physician education regarding HNPCC.
- To foster international collaboration and national registries for HNPCC.
Main Methods:
- The ICG-HNPCC convened annually, comprising approximately 70 members from 23 countries.
- Established administrative and informational centers for group activities.
- Utilized the Hereditary Colon Cancer Newsletter for communication.
Main Results:
- Achieved initial objectives within five years, significantly increasing global specialist awareness of HNPCC.
- Facilitated international collaborative studies and the development of HNPCC registries.
- Advanced the understanding of HNPCC, positioning it for potential identification via DNA testing.
Conclusions:
- The ICG-HNPCC successfully accomplished its founding aims, enhancing global awareness and research in HNPCC.
- HNPCC is poised to become the first common hereditary cancer syndrome identifiable through simple DNA blood tests.
- The group's role is crucial in standardizing the application of DNA technology for hereditary cancer management.
Abstract:
The international collaborative group on HNPCC (ICG-HNPCC) was established in 1989. The original aims of the group were: (1) to develop minimal criteria for the identification of HNPCC, to provide a basis for uniformity in collaborative studies; (2) to improve patient and physician education about HNPCC; (3) to establish international collaborative studies, and (4) to promote the establishment of national (or regional) HNPCC registries. The administrative base of the group is attached to the Netherlands Foundation for the Detection of Hereditary Tumours at Leiden. The Netherlands. An International Informational Center on HNPCC was established at Creighton University in Omaha. The Hereditary Colon Cancer Newsletter (previously the Polyposis Newsletter) serves as a medium for communication about activities of the Group. At present, the Group has about 70 members from 23 countries, and its meetings are held annually. After a period of five years, it can be concluded that the objectives of the ICG-HNPCC have been successfully accomplished. The existence of the ICG-HNPCC has contributed to an increase in awareness of HNPCC among specialists throughout the world. Due to the rapid developments in molecular genetics in HNPCC, it seems very likely that HNPCC will be the first common hereditary cancer syndrome, which can be identified by simple blood DNA tests. The value of the ICG-HNPCC will be extremely important in finding a uniform answer to the question how to utilize DNA technology for the benefit of the human race.