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Euro Huntington's disease network [logo]
Meeting 2010/05 -

Genetic Testing and Counselling meeting in Leuven

Thursday 6 May 
 
Plenary session 1
 
9.00 - Welcome and Introduction about the Aims of the 4th meeting
G. Evers-Kiebooms
 
9.20 - What happened about the almost agreed upon four guidelines after the Rome meeting?
Marina Frontali
 
9.40 - A short comment on the preparation of a discussion paper about “Reproductive options by the subgroup who initially prepared the PGD guidelines”
Guido de Wert
 
9.50 – Discrepancies between local labs and BioRep
Oliver Quarrell
+ Discussion
 
10.10 - Recent “Best Practice Guidelines” for molecular genetic testing for hereditary ataxias: what lessons can be learnt for the process of reaching international guidelines for predictive testing for HD?
Jorge Sequeiros and Sara Seneca
+ Discussion
 
10.30 Coffee break
 
Plenary session 2
 
11.00 - The view of the secretary general of WFNRHD on the future process to finalize International Guidelines on Predictive testing for HD
Raymund Roos
+ Discussion
 
11.25 - The view of the IHA on the future process to finalize International Guidelines on Predictive testing for HD
Asun  Martinez (to be confirmed)
+ Discussion
 
11.50 - Suggested updating of guidelines related to discrimination
Yvonne Bombard and Rhona MacLeod
+ Discussion
 
12.30 Lunch
DISCUSSION IN SUBGROUPS (14.00-15.30   Coffee break  16.00-17.30)
 
Subgroup 1:  How to reach updated INTERNATIONAL guidelines?
Leader: Marina Frontali
Suggested other participants: Asun Martinez, Christiane Lohkamp, Raymund Roos, Dorota Hoffman, Arvid Heiberg, Sara Seneca
 
Subgroup 2: Discrimination (Aim: incorporate the comments and suggestions from the plenary session discussion)
Leader: Yvonne Bombard
Suggested other participants: Rhona MacLeod, Bea De Schepper, Claudia Downing, Caterina Mariotti, Andrea Nemeth, Christina Costa
 
Subgroup 3: Informing and/or counselling children/minors
Leader: Aad Tibben
Suggested other participants: Christine de Die, Marcela Gargiulo, Pascal Borry, Andrea Boogaerts, Ariane Van Tongerloo, Odile Perrousseaux, An Kershaw, Guido de Wert, Ruth Glew
 
Subgroup 4:  How to deal with age at onset information in a counselling context?
Leader: Jorge Sequeiros
Suggested other participants: Gerry Evers-Kiebooms, Oliver Quarrell, Mary Davis, Christine Verellen, Paola Mandich, Emilia Bijlsma
 
Subgroup 5: Issues related to clinical trials for asymptomatic mutation carriers Role of our WG in this context?
Leader: Bernhard Landwehrmeyer (to be confirmed)
Suggested other participants: Alexandra Dürr, David Craufurd, Frances Heydon, Kim Tae, Reineke Bos, Jamie Levey
 
 
19.30 Dinner in Brasserie Zarza
 
 
Friday 7 May
 
Two Plenary sessions (9.00-10.30    Coffee break  11.00-12.30)
 
Presentation by the subgroups followed by discussion and closing comments
 
12.30 Lunch
 
 
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14.00 - 15.00  Short CLOSED MEETING with the participation of Bernhard, Marina, Gerry, Reineke, Asun and Bea
 
Aim: Agenda of the one-day meeting in Prague on Thursday 2 September