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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

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

Are there genetic connections between neurodegenerative diseases?

Published date: 1 December, 2010

A group of researchers working on ALS (Lou Gehrig’s disease) in yeast cells have found an unexpected genetic link between ALS and SCA-2, a disease in the same genetic family as HD. New links between these diseases might reveal new ways of approaching the search for treatments for diseases like HD. What are polyQ diseases? ... Read more

Is Huntington’s disease twice as common as we thought?

Published date: 27 November, 2010

In an article in the medical journal The Lancet, Sir Michael Rawlins claims that traditional estimates of how common Huntington’s disease is, might be dramatic underestimates. Why might this be, and what does it mean for the HD community and the search for effective treatments? Twice as common? Scientists and statisticians use the word ‘prevalence’ ... Read more

Two large HD observational studies – COHORT and Registry – merge to create ENROLL-HD

Published date: 24 November, 2010

When it comes to studying a disease that progresses slowly, like HD, there is strength in numbers. Studying many patients repeatedly over several years can give us powerful insights that can’t be gained through other research techniques. That’s why two of the largest observational studies, COHORT and REGISTRY are joining forces to form ENROLL-HD, the ... Read more
screenshot of journal

Huntexil for symptoms of Huntington's disease: where are we now?

Published date: 16 November, 2010

2010 was a big year for the small Danish pharmacology company NeuroSearch and its experimental drug, Huntexil, which aims to improve the movements and coordination of people with HD symptoms. What have NeuroSearch’s two clinical trials – MermaiHD in Europe and HART in the USA – told us about the possible benefits of Huntexil – ... Read more

Minocycline: the end of the road?

Published date: 10 November, 2010

The DOMINO study group has published the report of its ‘futility study’ of minocycline treatment in HD. Minocycline and a placebo pill were tested over 18 months. A futility study is designed to make it relatively easy for a drug to be recommended for larger studies, but minocycline treatment wasn’t promising enough and the study ... Read more

TRACK-HD reveals significant changes in pre-symptomatic HD mutation carriers and patients

Published date: 1 November, 2010

TRACK-HD, an observational trial of people carrying the HD mutation has released data describing changes over the first year of the study. These data show that a number of changes can be robustly observed in a single year of observing HD patients, which could be used to help plan drug trials. Brain imaging, in particular, ... Read more