Participating in HD research can be a rewarding and proactive way of contributing to the HD community. HD research studies often look for people both with and without the HD gene, so people from outside the HD community can also help.
See the list of studies below. If you are interested in participating in the studies that are actively recruiting, please be in touch with the relevant person to sign up. Alternatively, give us a call on 03 9902 0081 or email info@hdna.com.au.
The Experience of Cognitive Testing in Relation to Daily Life Cognitive Demands in Huntington's Disease
Recruitment complete
This study aims to investigate meaningful cognitive symptoms for the daily lives of people affected by HD and whether current cognitive measures are capturing these symptoms. We are interested in hearing from both people who have HD and from people who do not have HD but have a loved one who does. This study has been approved by the Monash University Human Research Ethics Committee (Project ID: 36930)
Results of this study will be made available in 2025 following publication. Thank you to everyone who volunteered their time to participate in this study.
Contact: Cali Roiboit
Email: cali.roiboit@monash.edu
Brain Training in Huntington's Disease
Recruitment complete
Researchers at Monash University Clayton Campus tested whether a brain training intervention improves cognitive function and strengthens brain networks in people with HD.
We thank everyone who volunteered their time on this study.
Results
We ran a pilot trial of computerised brain training in people with HD. 28 people in pre-symptomatic or early symptomatic stages of HD were randomly allocated to either the intervention group (12 weeks of brain training), or control group (3 monthly newsletters on healthy lifestyle).
All participants completed cognitive tasks at the start and end of the study (after 3 months). 16 participants also completed MRI scanning at both timepoints. We compared changes in the brain training group with changes in the control group.
Although results are preliminary due to the small sample size, some results appeared promising.
Overall, the brain training group had better maintenance of some higher-order thinking skills (ability to inhibit automatic responses, and switch between tasks), compared to the control group.
The brain training group also had preserved/increased volumes in some brain regions that typically atrophy (shrink) in HD.
We also examined the effects of brain training on several brain networks. We will provide an update once these results are published.
You can read our published articles here:
https://link.springer.com/article/10.1007/s00415-024-12855-7
https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.29972
Contact: Katharine Huynh
Email: katharine.huynh@monash.edu
Living Well with Huntington's Disease
Ji-Shen Loong is leading a multi-phase co-designed wellbeing study to support people living with HD and their families to live meaningful, purposeful lives. We would love to connect and collaborate across the community including those living with HD (broadly defined), family members, advocates and clinicians. We welcome people interested in the study across Australia to get in touch.
This study has been approved by the Monash University Human Research Ethics Committee (Project ID: 41021)
Contact: Ji-Shen Loong
Email: Ji.Loong@monash.edu
Cognitive Intervention Program for Huntington's Disease
We aim to develop a cognitive intervention program for people with Huntington’s disease (HD). As part of this project, we want to first learn about how thinking skills and daily activities change for people in the early stages of HD. We also want to gather opinions on a program designed to help support thinking skills. We are interested in hearing from both people with HD and their families.
Results of this study will be made available in 2026 following publication. This study has been approved by the Monash University Human Research Ethics Committee (Project ID: 43461).
Contact: Amy Huynh
Email: amy.huynh@monash.edu
The Clinical Utility of the Trail-Making Test in Huntington’s Disease
Clinicians and researchers often use cognitive tests to monitor and understand changes in thinking skills and memory in people with HD. This study aims to expand our understanding of some commonly used cognitive tests in HD, including the Trail Making Test, and how to use them effectively to monitor HD progression.
This study is not recruiting participants. Results of the research project will be made available through published research articles.
Contact: Seba Jacob
Email: Seba.Jacob1@monash.edu