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Genetic Testing/Counselling - Meetings - Meeting May 2008 -

Thursday 8 May

Minutes and presentations of the meeting

12.00 Registration and Lunch
 
13.30 Welcome and introduction
         (Gerry Evers-Kiebooms, Leuven)
 
14.00 The communication of the test result / of the number of CAG-repeats:
          The perspective of families
         (Bea De Schepper, European Huntington Association)
          Discussion
 
14.30 Communication of CAG-repeats: the perspective of a neurologist
          (Raymund Roos, Leiden)
          Discussion
 
15.00 The communication of the test result / of the number of CAG-repeats:
         Current practice and major concerns  
         All professionals  involved in the communication of test results from the lab to the clinicians give a short description (2-3 minutes) of the current practice in their centre (diagnostic tests in patients / predictive tests in persons at risk / prenatal tests and PGD)
 
                                                         Coffee break around 15.30
 
16.00 The communication of the test result / of the number of CAG-repeats:
          Current practice and major concerns   
          All professionals  involved in the communication of test results from the clinicians to the tested person and the family give a short description (2-3 minutes) of the current practice in their centre (diagnostic  tests in patients / predictive tests in persons at risk / prenatal tests and PGD)
 
17.30 Preimplantation genetic diagnosis in The Netherlands
          (Christine de Die, Maastricht)
          Discussion
 
17.50 Themes and Expectations for the subgroup discussions on Friday 9 May
and practical
          information        
 (Gerry Evers-Kiebooms)
 
 
                          Dinner in Brasserie Zarza (19.30)
 

Friday 9 May

  9.00 Reduced penetrance alleles
         (Oliver Quarrell, Sheffield)   
          Discussion
 
  9.45 Intermediate alleles
         (Alicia Semaka, Vancouver)
          Discussion
 
     
                            Coffee Break around 10.30
 
 
11.00 Informal discussion in subgroups about the communication of CAG-repeats and the needs of     
        families in this context
 
11.45 Informal discussion in subgroups  aimed at delineation of important issues as a
         starting point for the elaboration of guidelines   
         
 
                            Lunch around 12.30
 
 
13.30 Report by the subgroups
 
 
14.30 Discussion and decision making about  the next steps in the elaboration of the guidelines
         Additional objectives of the working group?
         Decision making about future activities of the working group
 
15.20 Closing comments
          (Gerry Evers-Kiebooms)
           
 
                        Coffee around 15.30