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Research articles

Click on this link to read our latest research articles.

Click on this link to find out more about Huntington’s NSW ACT Research grant opportunities.

HD Buzz

HDBuzz is a collaboration of scientists who write Huntington’s disease research news in plain language for the global HD community. They have allowed us to retrieve their articles for the NSW ACT Huntington’s community.

Westmead HD Outreach Service

The Outreach Service is part of a multidisciplinary team of medical, nursing and allied health services which provides review, intervention, treatment, case management, counselling, support, education and management of problems and issues associated with Huntington’s for patients, their families and carers. In addition to this care, the service has been involved in local and major international research studies since its establishment at Westmead Hospital in 1995. Hundreds of volunteers have generously participated in research to better understand the disease and in the search for effective treatments.

Westmead Hospital is a HSG Credential Research Site. Professor Clement Loy is the Principal Investigator for this site.

Global research collaboration

The Huntington Study Group (HSG) is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.

HSG is an organization of compassionate professionals dedicated to finding treatments that make a difference, providing rigorous care initiatives, and improving the quality of life and outcomes for HD families. They bring together families, medical professionals, clinical researchers, HD advocacy groups, and sponsors to raise awareness of HD, share knowledge and best practices, and develop innovative treatments.


Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease families. It is a resource for the entire HD community, including families, clinicians, researchers, advocates, and anyone else who has a connection to or an interest in HD.

Huntington’s Disease Network of Australia

The Huntington’s Disease Network of Australia (HDNA) is a project conceived by Professor Julie Stout of Monash University. Formed in 2020 to coordinate efforts that enhance care and services for HD and prepare for the advent of new HD treatments. The Map-HD Registry is for people in Australia who are affected by HD. All family members or people affected by HD are encouraged to register, whether or not they are at risk themselves.

          Huntington's Disease Network of Australia

Improving Huntington's disease clinical trial recruitment through patient and family education

Published date: 12 May, 2011

Trials of new treatments for Huntington’s disease are happening, but proving whether a drug works requires lots of suitable volunteers. Surprisingly, finding enough volunteers is often difficult. Now a group of HD professionals has shown that education and outreach to patients in the community works well for boosting recruitment. Progress towards effective treatments for Huntington’s ... Read more

Chubby mice reveal the importance of the hypothalamus in Huntington's disease

Published date: 2 May, 2011

Weight loss, change in appetite and other metabolic abnormalities are major issues in Huntington’s disease. Now, a Swedish team of researchers has used genetically engineered viruses, and some fat mice, to reveal the crucial role of a tiny brain region called the hypothalamus in the metabolic problems of HD. Weight loss in Huntington’s disease patients ... Read more

The genetic 'gray area' of Huntington's disease: what does it all mean?

Published date: 22 April, 2011

By popular request, a special feature article on the often confusing topic of ‘intermediate alleles’ and ‘reduced penetrance’ – the genetic ‘gray area’ that frequently comes up in discussions around genetic testing for Huntington’s disease. Having a genetic test for Huntington’s disease is an extremely worrying time. The only thing you want to hear when ... Read more

Dimebon fails in late-stage human HD clinical trial

Published date: 11 April, 2011

Dimebon, an experimental drug marketed by Medivation, fails to improve the symptoms of Huntington’s disease patients in the HORIZON trial. This is the end of the road for developing this drug for HD. What is Dimebon? Dimebon is an old drug, actually developed as an allergy medicine in Russia. Based on improvements in the mental ... Read more

FDA: further trial needed for Huntexil approval in HD

Published date: 4 April, 2011

NeuroSearch, the developer of experimental Huntington’s disease drug Huntexil, has reported on their meeting with the FDA. The FDA requires that another trial be conducted before Huntexil could be approved in the US. What is Huntexil? As previously discussed on HDBuzz, Huntexil is an experimental drug, specifically developed to help with some of the movement ... Read more

Successful gene therapy trial in Parkinson’s Disease gives hope for HD

Published date: 31 March, 2011

Scientists have successfully used viruses to deliver genes to the brains of Parkinson’s Disease patients. The gene carried by the viruses improved the movement symptoms of patients receiving injections. This proves that gene therapy in the brain can work, providing hope for similar therapies in HD. The connections between Parkinson’s and Huntington’s Disease Like Huntington’s ... Read more

Gene silencing for HD: the story so far

Published date: 22 March, 2011

Gene silencing means using specially designed molecules to ‘switch off’ the message that makes cells produce the harmful huntingtin protein. Our HDBuzz gene silencing primer explains the techniques, results so far and the challenges ahead. We’ve had lots of requests from readers to write an article on ‘gene silencing’ – also known as ‘huntingtin silencing’. ... Read more

Interview: Graeme Bilbe, Global Head for Neuroscience at Novartis

Published date: 14 March, 2011

One of the world’s largest pharmaceutical companies, Novartis, has been working on treatments for HD for the last five years. HDBuzz interviewed Graeme Bilbe, Global Head for Neuroscience at Novartis, to find out more about their progress. Drug companies don’t care about HD, right? Ask any scientist who regularly attends Huntington’s disease conferences, and you’ll ... Read more

What do sheep brains have to do with HD?

Published date: 9 March, 2011

A leading HD researcher is studying how well sheep adapt to change. Believe it or not, this work could be important for the development of cutting-edge treatments for HD. What is an animal model? People interested HD research are probably used to hearing about scientific discoveries that use rats, mice or even yeast to help ... Read more

Interview: CHDI Management

Published date: 25 February, 2011

CHDI Foundation, Inc. is a unique drug discovery organization focused exclusively on rapidly developing therapies that slow the progression of HD. It is the biggest funder and organizer of HD research worldwide, but many people affected by HD have never heard of it. During CHDI’s Annual Therapeutics Conference in Palm Springs, HDBuzz spoke exclusively to ... Read more