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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

Is access to predictive genetic testing for Huntington's disease a problem?

Published date: 23 April, 2013

Is access to ‘predictive’ genetic testing for Huntington’s disease a problem? Research from University of British Columbia researchers suggests that it is, at least in Canada. We explore the problem and possible solutions. Predictive testing for the gene mutation that causes Huntington’s disease allows people who know they’re at risk to find out if they ... Read more

HD Therapeutics Conference 2013 Updates: Day 3

Published date: 11 April, 2013

Our daily report from the annual Huntington’s Disease Therapeutics Conference in Venice, Italy on the third and final day of the conference. 9:07 – Day 3 of the HD therapeutics conference starts with a session on the most exciting programs at CHDI, getting close to the clinic. 9:10 – Marg Sutherland of the National Institute ... Read more

HD Therapeutics Conference 2013 Updates: Day 2

Published date: 10 April, 2013

Our second daily report from the annual Huntington’s Disease Therapeutics Conference in Venice, Italy. You can tweet @HDBuzzFeed, comment on Facebook or use HDBuzz.net to send us questions, comments and queries. 9:09 – Good morning! Jeff and Ed will be posting updates from day two of the Huntington’s disease therapeutics conference. 9:14 – Reminder for ... Read more

Major Roche-Isis deal boosts Huntington's disease gene silencing

Published date: 9 April, 2013

Isis Pharmaceuticals and Roche have announced a multi-million dollar deal to support the development of ‘gene silencing’ drugs to human trials. This is big news that secures the future of these exciting drugs for Huntington’s disease. If you ask a hundred Huntington’s disease researchers what the most promising experimental approach to preventing and treating Huntington’s ... Read more

HD Therapeutics Conference 2013 Updates: Day 1

Published date: 9 April, 2013

Our first daily report from the annual Huntington’s Disease Therapeutics Conference in Venice, Italy. We’ll be bringing you live updates via Twitter over the next two days. You can use HDBuzz.net, comment on Facebook or tweet @HDBuzzFeed to send us questions, comments and queries. 9:00 – Buonasera from Venice, where HDBuzz will be tweeting the ... Read more

Lost in translation? New insights into the making of the Huntington's disease protein

Published date: 1 April, 2013

Everyone has two copies of the huntingtin gene but Huntington’s disease is caused by a copy that’s extra-long. New research shows that cells have different controls for how the normal and extra-long instructions are used to make protein. These controls on the protein-making process may be targets for developing drugs for HD. You say potato… ... Read more

Simple rules for a good night's sleep in Huntington's disease

Published date: 25 March, 2013

In part two of our special feature on sleep problems in Huntington’s disease, we bring you Prof Morton’s ‘simple rules for a good night’s sleep’, distilled from her comprehensive review of sleep research in Huntington’s disease. Simple rules for a good night’s sleep In the first part of this special feature on sleep, Prof Morton ... Read more

Is a new technique set to revolutionize Huntington's disease genetic testing?

Published date: 18 March, 2013

Genetic testing offers at-risk people the option of knowing for sure whether they carry the gene that causes Huntington’s disease. For a tiny minority of people, the basic test needs to be followed up with more detailed analysis before a result can be given. Now a new technique may bring quicker results for those people. ... Read more

No surprises in published results from HART study of Huntexil for Huntington's disease

Published date: 12 March, 2013

A new paper in the journal Movement Disorders reports the findings of the HART study of pridopidine, also known as Huntexil – a new drug aimed at improving movements in people with Huntington’s disease. Unfortunately this publication doesn’t change much – a new, larger trial is still needed before we will know whether Huntexil works. ... Read more

Liver changes in Huntington's disease patients suggest more 'whole body' research needed

Published date: 6 March, 2013

Huntington’s disease patients seem to have a lot of changes outside the brain, but these issues haven’t yet been studied in great detail. New evidence reveals that Huntington’s Disease mutation carriers have differences in liver function, even before they have symptoms of HD. This new finding might help us understand the metabolic changes experienced by ... Read more