UCL HUNTINGTON’S DISEASE RESEARCH

INFORMATION FOR SCIENTISTS, CLINICIANS, PATIENTS, RELATIVES AND CARERS

 

hd yas

At a glance

Now recruiting
Involves blood tests
Scan Magnetic Resonance Imaging
HD core research assessments
Computer based tasks
Questionnaires
CSF donation (optional)

About this study

The HD Young Adult Study (HD-YAS) is an important and exciting study that has been designed to find the earliest time point at which any HD-related changes can be found in young-adult gene carriers, and therefore, the earliest time at which therapeutic intervention could be given to prevent HD-related changes and decline.

To do this we will recruit both young adult gene-carriers who are completely well, and control participants. A control is someone who does not carry the faulty gene.

Team photo

Professor Tabrizi and team at UCL involved in HD-YAS

What is involved?

The study requires a one-off visit to the National Hospital of Neurology and Neurosurgery in central London. We can provide hotel accommodation nearby if needed.

To study whether or not any changes can be identified, we will carry out a number of assessments. We will look at images of the brain using a safe technique called Magnetic Resonance Imaging (MRI). We will examine your cognitive and emotional function through a series of questionnaires and simple computer based tasks to examine the way you process, store and apply information, including about other people and social situations (cognitive and emotional tasks). We will also collect biological samples, such as blood and DNA (the genetic material in your blood) to look for potential biomarkers – a biomarker is something we can measure to help us better understand a disease.

We also want to collect cerebrospinal fluid (CSF), the fluid that surrounds the brain and spinal cord that can be used to provide information about the brain and the nervous system that is impossible to obtain in any other way.

Who can take part?

Individuals who carry the HD gene (HD Gene-Carriers) OR

Individuals who do not carry the HD gene (Controls)

Individuals who do not show any clinical symptoms of HD

Individuals up to 40 years of age

Individuals who are willing and able to comply with the study visit and study procedures

You may participate in HD-YAS if you already take part in other observational research studies such as Enroll-HD

In addition to the above, eligibility will be determined by the study doctor

Who cannot take part?

You cannot take part in this study if you do not know your HD genetic status i.e. if you are at-risk of developing HD

If you are interested in this study, or would like more information, please contact Jessica Lowe Jessica.lowe@ucl.ac.uk, 0203 108 7539.
Updated May 5, 2017