Manchester 09.09.2005

The proposed Euro-HD genetic modifiers working group will meet in Manchester for the first time to discuss possible clinical phenotypes that might be susceptible to genetic analysis given the large collection of HD patients and data on natural history of the disease being collected as part of Euro-HD. We aim to discuss the possibility of using the Euro-HD network to analyse genetic influences on the phenotype of the disease. We would like to invite participants in Euro-HD to attend the working group with a view to establishing a programme that will allow current and future research examining specific traits that participants in the network are interested in.

We hope any member of Euro-HD interested in such research will be able to attend.

We wish to investigate the way in which such analyses should be structured and eventually carried out, thus at our initial meeting we will discuss the following.

1. Identification traits of interest (broad group).
2. Examination of the relevant clinical scales to make sure they will give quantitative scores that will be useful in genetic analysis (geneticists, clinicians, statistical geneticists).
3. Estimation of heritability of those traits (biostatistician)
4. Estimation of sample size to give appropriate power to identify genetic markers of specific effect sizes by linkage or association (biostatistician).
5. New technologies.
6. What is the best way to move these things forward?  For instance, are there specific people we should invite to participate in the group? Should we employ a biostatistician?  Where will the funding come from?
7. Organising a workshop?
8. Specific projects.