UCL HUNTINGTON’S DISEASE RESEARCH

INFORMATION FOR SCIENTISTS, CLINICIANS, PATIENTS, RELATIVES AND CARERS

UCL HUNTINGTON’S DISEASE RESEARCH

Enroll-HD: A worldwide observational study for Huntington’s disease families

At a glance

Now recruiting

Involves psychology tests

Involves cognitive tests

Involves blood tests

About the study

Enroll-HD is a brand new worldwide observational study which has now taken over from the REGISTRY study which has recently closed to recruitment.

Enroll-HD is a study which aims to accelerate the development of therapies for HD by collecting more uniform clinical data and biological samples to better understand the natural history of HD. The study will build a comprehensive and extremely valuable database of information which will be available for use by HD researchers worldwide.

For more information about the differences between Enroll-HD and REGISTRY this article on HDBuzz provides a more detailed overview.

What is involved

Study visits are conducted annually and usually take between 1-2 hours depending on what information is needed.

Visits are conducted in the National Hospital for Neurology and Neurosurgery and can be conducted alongside your clinic appointment. If you do not attend our clinic or would prefer to come in on a different day to clinic we can arrange a separate study visit at a time to suit you.

During each study visit, you will undergo a series of movement and behavioral tests. Functional tests will be given to determine how well you perform various tasks on your own. You will also answer questions to help the study team evaluate your emotional state and quality of life.

All participants are required to give a blood sample at their first appointment, this is compulsory at the first visit but does not need to be repeated at follow up visits if you are not keen on giving blood samples. Additionally, if you wish, you can choose to donate a small volume of blood at each follow up visit to help the study team understand why and when certain symptoms appear and to identify possible ways to develop new, effective drugs.

Enroll-HD is not a clinical trial, and potential therapies are not being tested. However, you can learn about upcoming clinical research studies that you might be interested in.

Who can take part?

Any member of a family affected by HD can take part. This includes:

• Individuals who know they carry the expanded gene, whether or not they show signs and symptoms of the disease
• Individuals who are at risk of developing the disease (but have not undergone genetic testing)
• Individuals who have a family history of HD but know they do not carry the expanded gene
• Spouses/partners (not blood-related) of family members with HD

Children under the age of 18 with clinically diagnosed juvenile HD may be included in this study with the consent of a parent or legal guardian.

Who cannot take part?

We are not currently recruiting any community controls, that is people from the general population who are not affected by HD (people who are not from an HD family). People with some medical conditions, or taking certain medications that may interfere with the tests, may not be able to take part. We will be able to assess this with you before your appointment.

Find out more

Download the study flyers:Study flyer for new participants
Study flyer for participants who were previously in REGISTRY
Participant information sheet with full details of study

 

Visit the Enroll-HD study website for more information and details of other sites running Enroll worldwide
Contact the study team for more information: Ms Monica Lewis m.lewis@ucl.ac.uk 020 3108 7480
You will need Adobe Reader to view information sheets. Click here to download it.

http://www.enroll-hd.org

Updated April 28, 2014