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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

Buzzilia Video: Day 3

Published date: 28 October, 2013

In our final video feature from the 2013 World Congress on Huntington’s disease in Rio de Janeiro, we interview we interview Jim Gusella of Harvard Medical School about genetic modifiers of HD, and Neil Aronin of University of Massachusetts Medical School about gene silencing and sheep. You can see the unedited video including the ‘Generation ... Read more

Buzzilia Video: Day 2

Published date: 19 October, 2013

Here’s Buzzilia, video 2: highlights and interviews from the World Congress on Huntington’s disease 2013 in Rio de Janeiro. Jeff and Ed discuss biomarkers and talk to Dr Ralf Reilmann about quantitative motor assessment, and Dr Julie Stout about cognitive problems. The full unedited video (31 minutes), including a special appearance from Charles Sabine, can ... Read more

What the 'big neurodegeneration breakthrough' means for Huntington's disease

Published date: 15 October, 2013

Many people in the Huntington’s disease community have noticed reports highlighting a recent study from the University of Leicester, which the BBC claimed “could treat Alzheimer’s, Parkinson’s, Huntington’s and other diseases”. The underlying study is well-executed research of some importance. However, the press hype is out of all proportion to the impact of this research. ... Read more

The sweet lowdown: Huntington's disease brains use sugar differently

Published date: 11 October, 2013

The brain is a very hungry organ, but does it consume energy differently in Huntington’s disease? A team led by David Eidelberg of the Feinstein Institute for Medical Research has been studying the patterns of energy consumption in the brains of people carrying the HD mutation. Changes in how much sugar the brain uses are ... Read more

Buzzilia Video: Day 1

Published date: 9 October, 2013

We present Buzzilia, video 1: news highlights and in-depth interviews with top HD researchers from the World Congress on Huntington’s disease 2013 in Rio de Janeiro. On the opening day of the Congress, Jeff and Ed review the major developments since the last World Congress in 2011, and talk to Prof Elena Cattaneo from Milan, ... Read more

Video feature: Huntington's disease research… in space!

Published date: 27 September, 2013

The huntingtin protein, which in its mutant form causes Huntington’s disease, is difficult to study because it forms clumps rather than neat crystals. Now, young HD researcher Gwen Owens of California Institute of Technology is reaching VERY high to try to crack the problem. In a special video interview screened at the recent HD World ... Read more

'Buzzilia' from the Huntington's Disease World Congress: day 4

Published date: 18 September, 2013

Our final report from the last morning of the World Congress on Huntington’s Disease in Rio de Janeiro, Brazil. 08:12 – Bernhard Landwehrmeyer, of Ulm and CHDI, starts off the therapeutic session of the WCHD with a discussion of drugs under development. 08:15 – Landwehrmeyer: There are at least 4 companies developing drugs for one ... Read more

'Buzzilia' from the Huntington's Disease World Congress: day 3

Published date: 17 September, 2013

Our third daily report from the World Congress on Huntington’s Disease in Rio de Janeiro, Brazil. 08:05 – And we’re back, for day 3 of the World Congress on Huntington’s Disease in Rio de Janeiro 08:07 – Jim Gusella, one of the leaders of the hunt for the HD gene, addresses the WCHD on why ... Read more

'Buzzilia' from the Huntington's Disease World Congress: day 2

Published date: 16 September, 2013

Our second daily report from the World Congress on Huntington’s Disease in Rio de Janeiro, Brazil. 08:06 – Good morning from Rio for day 2 of the World Congress on Huntington’s Disease 08:07 – We begin the day with a session on ‘biomarkers’ – things we can measure in people that may help us develop ... Read more

'Buzzilia' from the Huntington's Disease World Congress: day 1

Published date: 15 September, 2013

Our first daily report from the World Congress on Huntington’s Disease in Rio de Janeiro, Brazil. 12:50 – Welcome to Buzzilia! The 2013 World Congress on Huntington’s Disease is about to start in Rio de Janeiro! We’ll be tweeting… 13:16 – Rodrigo Osorio estimates there are 40,000 Latin Americans suffering from HD – but as ... Read more