Enroll-HD: A Global Resource for Huntington's Research
Enroll-HD is a worldwide clinical research platform and observational study that aims to involve as many as 20,000 people from families affected by HD.
The purpose of Enroll-HD is to create a global database of people affected by HD to foster the development of treatments. The study collects data on mood, cognition, movement, quality of life, family histories, and genetic characteristics.
How does Enroll-HD investigate HD?
By collecting data on mood, cognition, movement, quality of life, family histories, and genetic characteristics.
What will we learn from this research?
Enroll-HD is helping us learn about the characteristics of people with HD around the world. Enroll-HD also provides the HD research community worldwide, and us locally, with efficient access to research participants who can help us to test and improve measures of cognition, mood and movement, etc.
Who is eligible?
- Men and women, 18+ years of age.
- Children under 18 years with a diagnosis of juvenile HD, with consent of parent/legal guardian.
- People with the expanded HD gene, whether or not they have symptoms of HD.
- People at risk, but who haven’t taken the genetic test.
- People with a family history of HD, even if they do not carry the expanded HD gene.
- Spouse/partner (not blood relations) of people with HD.
What will you need to do?
- Visit 1: go to your local study site for a 2.5-hour session
- Do some questionnaires, motor tests and cognitive tests that measure memory, focus, emotional state, quality of life.
- Give a blood sample.
- Answer medical history/demographic questions.
- Follow-up visits: go to your local study site for a 1-2 hour session to do some questionnaires and cognitive/motor tests. Give a blood sample (optional).
Where will you need to go?
Two participation sites are currently open in Melbourne. The first is at Calvary Health Care Bethlehem, and the second is at the Royal Melbourne Hospital. You may choose to visit the site that is most convenient for you!