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Genetic Testing/Counselling - Meetings - Meeting June, 2009 -

PRELIMINARY PROGRAMME ROME MEETING

THURSDAY JUNE 11th
 
Morning session
9.00h
Welcome by Marina Frontali and introduction by Gerry Evers-Kiebooms
 
9.30h
Subgroup 2: “Testing of minors” by Pascal Borry + one hour subgroup report + discussion
 
11.00h
Coffee break
 
11.15h
Subgroup 1: “PGD” by Guido de Wert + one hour subgroup report + discussion
 
12.45h-14h
Lunch
 
Afternoon session
14.00h
Report and discussion subgroup 3  
                      
15.15h
Report and discussion subgroup 4
 
16.00h
Coffee break
 
16.15h
Report and discussion subgroup 5
 
17.30h
Discussion
 
18.00h
End day one
 
20.00h
Dinner

 
FRIDAY JUNE 12th
 
Morning session
9.00h
Next steps and Conclusions for the “Updating of the guidelines)
 
11.00h
Coffee break
 
11.15h
Presentation of Gioia Jacopini: Communication of risk to children
 
11.45h
Presentation of Dan van Kammen: Increased people comfort in participating in expanded HD gene testing
 
12.15h
Discussion and Conclusions
 
13.30h
End of the meeting
 

Subgroup composition

Subgroup 1:
PGD
1)  Christine de Die (leader)
2)  Aad Tibben
3)  Claudia Downing
4)  Inge Liebaers
5)  Gerry Evers-Kiebooms
6)  Guido de Wert
7)  Peter Braude
 
Subgroup 2:
"predictive testing of minors" 
1)  Marina Frontali (leader)
2)  Ruth Glew
3)  Asuncion Martinez-Descals (IHA)
4)  Bea De Schepper (EHA)
5)  Lucienne van der Meer
6)  Pascale Ribaï 
7)  Milena Cannella
8)  Alexandra Dürr
9)  Reinier Timman
10) Pascal Borry
 
Subgroup 3:
intermediate alleles
1)  Alicia Semaka (leader)
2)  Michael Hayden (co-leader)
3)  Dan van Kammen
4)  Bonnie Lee La Madeleine
5)  Rhona MacLeod
6)  Maria Garcia Barcina
7)  Jorge Sequeiros
8)  Pascale Ribaï 
 
Subgroup 4:
5.2.3 and 5.2.4 (limitation of the test …information….. about age of onset) 
1)  Michael Hayden (leader)
2)  Alicia Semaka
3)  Claudia Downing
4)  Christine Verellen
5)  Pascale Ribaï
6)  Peter Como
7)  Ferdinando Squitieri
8)  Gerry Evers-Kiebooms

Subgroup 5:
2.8 (‘All laboratories are expected to meet rigorous standards of accuracy… must work with genetic counsellors….)
1)  Jorge Sequeiros (leader)
2)  Sara Seneca
3)  Oliver Quarrell
4)  Emilio di Maria
5)  Maria José Trujillo Tiebas
6)  Ulrika Hösterey-Ugander