The HD-YAS 1.0 study revealed that, although function was completely normal, there was some evidence of subtle early changes in gene carriers decades from developing the disease. The purpose of HD-YAS 2.0 is to determine whether there is any change over time in these early disease signs. To do this, the study will collect MRI and clinical data and there is also the option to donate cerebrospinal fluid (CSF) and a blood sample for the analysis of HD-related markers which relate to any early changes we see in the brain and functioning.
The 131 participants who took part in HD-YAS 1.0 are being invited back to undergo similar assessments so we can look at what has changed. New participants are also being included to account for participants from the first study who may not want to participate again. This will help us to guide the use of any potential future treatments, so that they can be given at the earliest and most effective time in order to prevent or treat HD disease progression.
This study comprises of two visit, 2 years apart, to the National Hospital for Neurology & Neurosurgery, where all the study assessments, MRI and CSF and blood sample collection will take place. An overnight stay in a hotel will be arranged by the research team for the CSF and blood sample collection if required, and all study related expenses will be reimbursed.
If you are interested in participating and would like find out more, please contact the HD research team for more information:
Tel: 0203 108 7483
Email: k.fayer@ucl.ac.uk