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Huntington's Disease Youth Organization

HD-YAS Study (UK only)

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

HD-YAS

Professor Sarah Tabrizi’s team at University College London are conducting a very important research study called the Huntington’s Disease Young Adult Study (HD-YAS). The study aims to identify the earliest point at which subtle HD-related changes may be found, and therefore, the earliest time when future treatments can be given to prevent HD. The study will include 120 young adults between the ages of 18-40. Half of this group will be people who carry the gene and the other half will be people who don’t carry the gene, such as family members, partners, friends or people who have tested negative for the HD gene.

The study opened in August 2017 and, so far, 74 young people from around the country have travelled to London to take part, and many more have been in touch to see if they are suitable to participate. The visit lasts a day and a half and involves having an MRI brain scan, playing computer based tasks and games to help understand the way people remember and process information, donating cerebrospinal fluid (CSF) and blood samples, and answering questionnaires about ‘psychiatric’ symptoms such as anxiety and depression.

Participants are welcome to attend with somebody for company. The team arrange the visit to London and provide travel, hotel, and expenses.

The study is open to UK residents only.

If you would like to speak to someone at UCL about potentially joining the study, please email Jessica Lowe at jessica.lowe@ucl.ac.uk

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A participant having an MRI scan. An MRI scanner contains a large magnet and can show detailed pictures of the brain. Our researcher, Eli, explains the scan to Nick before he lies down flat on the bed and his head is placed inside the magnetic ring.

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A participant, Lauren, during a lumbar puncture to obtain CSF (left). Another participant, Nicky, shows her CSF immediately after her lumbar puncture (right).

We obtain CSF through a simple and common procedure called a lumbar puncture. Our study doctor injects some local anaesthetic into the back then inserts a very thin needle through a space so that CSF can drip out. CSF is a clear fluid that bathes the brain and spinal cord; it contains very important information about the brain that we can measure called ‘biomarkers’.

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The HD-YAS team at UCL. The specialist team consists of HD neurologists, including Sarah Tabrizi (left), a psychiatrist, psychologist and brain imaging scientists.