REPORT 12TH MEETING OF THE INTERNATIONAL COLLABORATIVE GROUP ON HEREDITARY NON-POLYPOSIS COLORECTAL CANCER, 22 SEPTEMBER 2000, TIBERIAS, ISRAEL

1. Opening

Paul Rozen introduced the meeting. Hans Vasen, Secretary of the ICG-HNPCC, was unable to attend due to personal circumstances and sent his apologies.

Paul Rozen reviewed the origins of the ICG-HNPCC 13 years earlier and pointed out that new questions had arisen and there was a need for the group to evolve;

(1) As had been mentioned in a letter distributed before the meeting to all members, it was felt that there was a need for a more formal and democratic structure. This formalisation included a renewal of the Council and the establishment of a final Constitution;

(2) Members of the group had been invited by letter to express their opinion on several issues defined in a draft constitution, This included the scope of the ICG-HNPCC and its collaboration with Leeds Castle Polyposis Group (LCPG) and the organisation of collaborative studies;

(3) Several of these questions on future policy will have to be addressed in sub-committees. This includes the broadening of the group's; activities to include other Familial Gastrointestinal Cancer disorders.

However, even though the framework for a Constitution had been accepted by mail, at present, the final constitution for the group had not been decided upon. Therefore, it was proposed that for an interim period of 3 years an expanded Council would be elected at the meeting to overlap with the existing active Council Members. This Council would organise a procedure to suggest a final constitution subject to acceptance by the General Meeting. New elections of Council members will take place, after the interim period, at the meeting to be held in Cleveland.

The meeting supported the proposal and decided upon members to be chosen for an interim Council. Henry Lynch, honorary Chairman, Lucio Bertario, Chairman of the next meeting in Venice, James Church, Chair-Elect who will host the meeting thereafter in Cleveland. Hans Vasen was confirmed as non-voting Director of the administrative secretariat. Further members of the Council proposed and chosen were Steffen Bulow and J-P Mecklin, who were also members of the former board, Shozo Baba, Albert de la Chapelle, John Burn (secretary), Riccardo Fodde (first accepted to be a member of the ICG-HNPCC), Jeremy Jass, Finlay Macrae and Gabriela Moeslein.

The main idea behind these decisions was the feeling that the Interest Group, which functioned thus far, has now rapidly developed as a main policy making organisation on HNPCC. Faced with a rapid development of molecular and clinical genetic studies the present period was considered to be of crucial importance. While it was recognised that the procedure that had been adopted was not an ideal one, the prompt election of an interim Council which could be productive in the next few years was felt to be necessary.

A draft constitution had been sent to the members and was discussed. The following comments were made with regard to various s ections of this draft. These remarks will be considered by the interim Council in the procedure by which a final Constitution would be decided upon. They would be incorporated in a proposal to be discussed at the following business meeting.

1.2 & 2.3
The name of the group, ICG-HNPCC, was accepted as preferable to the alternative offered. The cooperation with the LCPG and other study groups on familial gastrointestinal cancer and the scope of the ICG-HNPCC would receive consideration. The success of the ICG-HNPCC was, to a large extent, based upon its focus on one specific subject. Therefore, it would be important that in exploring co-operation with other groups the focus of the ICG should not be lost.

3.2
With regard to institutional membership and votes for institutional members some pros and cons of one vote for each institutional member versus one vote for each institution were discussed.

4.3
Donations and commercial support would be necessary. However, independence of the Group from commercial interests would be mandatory.

5.5
It was considered important that the Council Members to be voted on in the future would be chosen based upon the procedure described in this paragraph.

5.6
The Council would invite co-ordinators for various sub-committees. The co-ordinators would subsequently organise sub-committees in which various issues could be discussed. One of these committees should addressthe co-operation between ICG-HNPCC and the LCPG. Other subjects which could be taken up by sub-committees are Microsatellite instability/immuno-histochemistry, chemoprevention and the various collaborative studies. Establishment of sub-committees for a period of 4 years was proposed.
Since the next meeting of the ICG-HNPCC will take place within a year it will be important that the draft for a final Constitution is distributed as soon as possible. The need for a timetable for future development was emphasised.
Hans Vasen had sent a financial report of the administrative secretariat of the ICG-HNPCC. The question arose if the new journal Familial Cancer (H. Lynch, H. Vasen and F. Menko, editors) would be the official journal of the ICG-HNPCC. It was felt that the LCPG would need to be consulted on this issue.The next meeting in Venice was announced. Details will be available on the website of the ICG-HNPCC. The meeting in Cleveland will take place in the first week of September 2003, a formal brochure will follow.