This study aims to explore the views of those at risk OR gene-positive on joining a study where groups and tests change as the disease progresses.
HD views on Enroll-HD 2.0 cohorts
CHDI Foundation
CHDI Foundation is a privately funded, nonprofit organisation dedicated to biomedical research on Huntington’s disease.
They want to learn:
- How individuals view different aspects of a Huntington’s disease research study.
- Whether certain study details influence people’s decisions about taking part.
About the study:
Participants will complete an online survey that asks questions such as:
- How would changing research groups affect you?
- Would changes in assessment scores worry or upset you, knowing they may reflect disease progression?
- Would you be comfortable moving between groups, given that Huntington’s naturally worsens over time? Please note that scores are used only for research and do not affect daily life or care.
The survey will take about 30 minutes and must be completed in one sitting.
You will not be asked for personal identifying information, and may skip over any questions you prefer not to answer, without explanation.
Who can take part?
Participants must be:
- Between 18 and 40 years old
- A UK resident
- At risk of Huntington's disease or gene-positive
How to take part:
To begin filling in the survey:
If you have any questions, please email info@hda.org.uk, or alternatively call 0151 331 5444.
Study closes at the end of November.