The JHD working group is currently looking at modifying rating scales which are designed to be more suitable for monitoring disease progression in those with jhd.

The following modified scales for jhd will be trialled:

• UHDRS Motor
• UHDRS Functional Assessment
• UHDRS Total Functional Capacity

Additional questions have been added regarding the process of diagnosis.

Parents of those with jhd will be asked if they would like to keep a diary that records symptoms and medication, and any changes in these.

For further information, please contact Nadia Peppa.