Minutes of the Council Meeting held on 26th February 2009 at The Royal Society of Medicine, London
Present:
Gabriela Möslein, Chairperson
Terri Berk
Steffen Bülow
Annika Lindblom
Patrick Lynch
Finlay Macrae
Kay Neale
Susan Peterson
Miguel Rodriguez Bigas
Hans Vasen
1. Apologies for Absence
James Church, Takeo Iwama, Robin Phillips, Allan Spigelman and Ian Tomlinson
2. Minutes of the last meeting
Minutes of the last meeting, which had been distributed prior to the meeting, were agreed to be an accurate record.
3. Business arising from the Minutes
None
4. Membership Update
Membership stood at 110 in 2008. To 23rd February 2009 a total of 94 people have either renewed their membership or joined the Society; a further ten subscriptions are being processed.
It was agreed that from 2011 membership fees would be charged biennially in an attempt to reduce the number of members who tend to pay their subscription only in the year of a Scientific Meeting. This would also reduce the amount of work involved in collecting subscriptions and sending reminders.
It was also suggested that a note on the Registration form should indicate that there is a preference for online payment. The online form should be amended to make it clear that the Justgiving site is used because it is good value for money; setting up a dedicated secure site for InSiGHT would be expensive but may be considered in the future.
It was agreed that from 2011 there should be a higher subscription for doctors and a reduced subscription for nurses but the details need further thought.
Professor Macrae said that he would write a note to be used when contacting people who may be interested in knowing more about the Society. He will send it to Ms Neale who will forward it to members of Council with a copy of the Application for Membership Form. (Action Prof. Macrae, Kay Neale)
Following discussion it was agreed that the list of members should be put onto the website. The list would indicate subscription status and would be updated from the Administrative Headquarters in London.
5. Website update
Dr Vasen was congratulated on the improvement of the website. Photographs taken at the last Council meeting had been uploaded. Ms Neale confirmed that the Minutes of the last meeting would be sent to Mary Velthuizen now that they had been approved and signed off.
There was discussion as to the benefits and disadvantages of having a password protected area of the website. The benefits would include the fact that names with addresses would be protected; useful information would be available only to members and this would encourage membership. Disadvantages include the fact that information on the site would be restricted and, in general, the Society would like to be helpful to all; some members have difficulty remembering their password.
It was agreed that the mutations database should remain open to public access.
A tab will be made for news and the three monthly newsletter will be uploaded regularly.
Several websites offering guidelines for disease management are listed on the InSiGHT site.
6. Human Variome Project and InSiGHT
Professor Macrae reported that the HVP/InSiGHT work is well ahead of other groups and funding for a pilot project is currently being sought. The focus is on a narrow set of genes with MMR top of the focus because the agencies funding the original programme found the initial proposals too big to tackle. The leaders in the HVP executive are pleased with the way InSiGHT members are collaborating and moving the project forward.
The notes of the meeting held in December to discuss collection of information about the phenotype are available. A meeting was held on 19th and 20th February 2009 to discuss the collection of variant data collated with phenotype and histopathological information. Hans Morreau is developing a histopathological database and is interested in linking with other pathologists to help with its development.
At the same meeting there was discussion about moving forward to determine ways to calculate quantitative risk of unclassified variants of the MMR genes using Bayesian principles. The approach is to establish a prior probability based on phenotypic criteria, to which add layers of likelihood ratios are added incorporating information from computational biology (in silico analyses) including evolutionary conservation, structural biology predictions based on the variant DNA, segregation analysis (if available), and functional in vitro studies. The place of MSI and immunohistochemistry in this algorithm was considered at length; however, as most testing is conditioned on (done because of) a positive test result in one or both of these tests, the likelihood ratio is confounded and therefore not a valid parameter to include. Ultimately, the post probability would give a semi-quantitative risk assessment of the pathogenicity of any particular variant.
Currently most mutation databases do not assign a measure of pathogenicity. The meeting agreed that an International committee was needed to do this. If the information was listed on the InSiGHT database a disclaimer would be needed to afford legal protection. Ideally the mutation database should be under the auspices of the WHO and Sean Tavtigian, who was at the meeting, had indicated that although a formal proposal would be needed this was unlikely to be a problem.
A governance process would be required to manage questions such as the actual fields that would be included on the database, how funds would be distributed, to organise the wording of the disclaimer and other such things. Names suggested were: Paivi Peltomaki, Mike Woods, Hans Vasen, Rolf Sjimons, Johan den Dunnen, Patrick Lynch, Finlay Macrae and Annika Lindblom.
It will be important to get all laboratories to submit mutation information and one person for each nation to be responsible for making sure that this happens in an organised fashion. It was suggested that the names of the laboratories should be listed on the website with the information that they provide in order to encourage commitment. It was felt that if the process is started for this project it will work well for other genes in the future.
Germany has already uploaded their mutation data, Canada is ready to do so and many more have agreed in principle.
The various models of phenotype synopsis (Barnetson, Chen, etc) need to be discussed at the pre-meeting in Dusseldorf then a clear proposal can be made.
7. Paediatric Self Concept Study
Ms Berk reported that they have been unable to enrol enough children into their study. A copy of the study outline has been sent to Dr Vasen and, following discussion, it was agreed that this could be put onto the website in order to encourage other Institutions to take part.
8. Addition of E-cadherin to database
David Huntsman has established an E-cadherin database and it was agreed that it should, as he wishes, be added to the InSiGHT database.
9. InSiGHT Newsletter
The first Newsletter had been written and widely distributed, although some people had not received it. Another copy will be sent out and Dr Vasen will upload it to the website. (Action Hans Vasen)
10. Update of Meeting in 2009
Organisation for the meeting is going according to plan. The pre-meeting on the Tuesday is a closed meeting; the CFR will be funding 24 people to attend but will not pay towards the cost of the meeting rooms.
It is important for both European and American CME points to be awarded. Dr Lynch will to find out if this can be arranged for the Americans as he is one of the Deputy Chairmen and therefore a co-host of the meeting. Ms Neale will try to find out if European points can be organised from St Mark's. (Action Dr. Patrick Lynch and Kay Neale)
11. Biennial Meeting in 2011
The meeting in 2011 will be co-hosted by Dr Patrick Lynch and Dr Miguel Rodriguez Bigas and will be held from 30th March to 1st April 2011 inclusive with a CGA meeting held the day before on 29th March.
Accommodation has been reserved at a resort just outside San Antonio costing 300 USD per night including taxes. The price includes internet access, a gym, tennis courts, golfing greens and bikes. Other activities from hunting to hiking can be organised by the hotel at extra cost. Cheaper hotels are nearby. The area is very beautiful and the weather at that time of year very pleasant.
The conference organisers will attend the meeting in Dusseldorf and try to obtain some early registrations at a favourable rate.
12. Any other business
There was some discussion about nominations to Council. It was noted that people being asked to stand must be fully paid up members of the Society. Also candidates should be alerted to the fact that they were standing for election in the first instant. They would need to obtain sufficient votes at the Scientific Meeting in Dusseldorf in order to be invited to join the Council.
13. Date of next meeting
The next meeting will be held on Thursday 25th June 2009 at the Intercontinental Hotel, Dusseldorf.