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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

Huntington’s Disease research update

Published date: 12 November, 2019

Handwriting Can Help Identify Asymptomatic Huntington’s, Study Suggests.

Could molecular handcuffs lower the protein that causes Huntington's disease?

Published date: 12 November, 2019

Several approaches are being taken to lower the amount of the toxic huntingtin protein as a way to treat Huntington’s disease. Last week, a study reported a new strategy that helps target huntingtin for disposal by the cell. This approach is in its earliest stages and requires more testing, but the concept is sure to ... Read more

Exciting new Huntingtin lowering tool described

Published date: 5 August, 2019

An exciting new tool in the fight against Huntington’s disease has just been described. An international group of scientists have developed a new, targeted, way to lower levels of the mutant huntingtin protein. Huntingtin genetics: from gene to protein Huntington’s disease (HD) is caused by a genetic change – or mutation – in the DNA ... Read more

Details emerge of first Huntington’s disease gene therapy clinical trial

Published date: 17 July, 2019

At the recent Huntington’s Disease Society of America annual convention in Boston, UniQure announced crucial details of its planned clinical trial for its experimental therapy, AMT-130. We previously wrote about AMT-130 here, so this article covers the basics and what’s just been announced. Huntingtin-lowering gene therapy in an nutshell AMT-130 is a huntingtin-lowering treatment, because ... Read more

Fresh Updates from First Huntingtin Lowering Study Publication

Published date: 7 May, 2019

Today saw the publication of the first manuscript describing a huntingtin lowering trial in Huntington’s disease patients. This study, sponsored by Ionis and Roche, provided clear evidence of researchers’ ability to safely reduce mutant huntingtin protein in the spinal fluid. An overview of these results has previously been shared, but this manuscript provides important new ... Read more

An Updated Trial Design for Roche's Huntingtin Lowering Trial

Published date: 21 March, 2019

Today we received word about a change to the design of Roche’s ongoing huntingtin lowering trial – known as the GENERATION HD1 study. The update in the trial design is a surprise, but we believe it’s a good thing. What exactly happened? The Roche approach to huntingtin lowering Readers of HDBuzz will be very familiar ... Read more

When interrupting is good: genetic hiccups that protect against Huntington's disease

Published date: 14 March, 2019

Multiple new studies have identified what may be the most important new fact about the genetics of Huntington’s disease since the gene was discovered in 1993. At least two research groups around the world simultaneously report that a tiny genetic hiccup in the HD gene has a big impact on HD symptoms. What’s CAG and ... Read more

Huntington's disease therapeutics conference 2019 – Day 3

Published date: 5 March, 2019

Jeff and Ed report from the Huntington’s Disease Therapeutics Conference – the biggest annual gathering of HD researchers. This year’s conference is bigger and more exciting than ever. Read About Day 1 here. Read about Day 2 here. Thursday morning – Huntingtin structure & function The final day of the HD Therapeutics Conference begins with ... Read more

Huntington's disease therapeutics conference 2019 – Day 2

Published date: 28 February, 2019

Jeff and Ed report from the Huntington’s Disease Therapeutics Conference – the biggest annual gathering of HD researchers. This year’s conference is bigger and more exciting than ever. Read about Day 1 here. Advanced tools for translational research Morning everyone! The second day of the 2019 HD Therapeutics Conference is kicking off in Palm Springs. ... Read more

Huntington's disease therapeutics conference 2019 – Day 1

Published date: 27 February, 2019

Jeff and Ed report from the Huntington’s Disease Therapeutics Conference – the biggest annual gathering of HD researchers. This year’s conference is bigger and more exciting than ever. Tuesday morning – white matter Good morning from sunny Palm Springs, and the first day of the 2019 Huntington’s Disease Therapeutics Conference! Up first this morning, a ... Read more