Main goal

To address relevant issues related to the communication of genetic test results from laboratories to clinicians, from clinicians to tested individuals and within families, as well as to review guidelines for predictive genetic testing and counselling.
 
The working group is a multidisciplinary working group with clinical and lab geneticists, neurologists, psychologists, psychiatrists and with a number of leading persons of the European Huntington's Disease Association.
 
Well motivated members of the European HD Network belonging to the disciplines mentioned and who were not contacted in Dresden are of course welcome to join the working group.

Aims of the working group
 
The first goal is the elaboration of guidelines for the communication of the number of CAG-repeats and the implications for the future (health) of the tested person - or fetus or embryo – as well as for the transmission to the next generation(s), taking into account the instability of the mutation. Special attention will be paid to reduced penetrance alleles and intermediate alleles.

In the communication issues several levels should receive attention:

• communication by the molecular geneticist to the neurologist or clinical geneticist
• communication by the neurologist or clinical geneticist to the tested person or the persons concerned (depending on the type of test).
• communication within the family.

Additional objectives related to genetic testing for HD may result from the discussions during the meeting of the working group.
To reach its goal the working group should be multidisciplinary (neurologists, clinical geneticists, genetic counsellors, molecular geneticists, psychologists) and involve key representatives from the European Huntington Association.

First workshop in Leuven on Thursday 8 - Friday 9 May 2008

Second workshop in Lisbon on Thursday 4 September 9.00-18.00

Third workshop in Rome on Thursday 11-Friday 12 June 2009
 

, Italy