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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 goes viral as UniQure inches ahead in gene therapy race

Published date: 30 January, 2019

Dutch-American company uniQure has received approval from the US drug regulator the FDA, to begin the first ever gene therapy trial in Huntington’s Disease. Their plan is to use a virus, injected into the brain, to turn cells into a factory that makes a weapon to lower the harmful huntingtin protein. Huntingtin lowering recap At ... Read more

Advances on many fronts in the battle against the protein that causes Huntington's disease

Published date: 4 December, 2018

We’ve had a run of exciting updates from Ionis and Roche/Genentech about their program to test a drug that lowers production of the huntingtin protein – but they’re no longer the only game in town. Recently several other players – including Wave Life Sciences, PTC Therapeutics, and Voyager Therapeutics, have made big announcements about their ... Read more

HDSA FAQ on the Roche/Genentech RG6042 program

Published date: 19 October, 2018

On Wednesday, September 26th, HDSA hosted a webinar presented by Genentech/Roche in which representatives from their Huntington’s disease team shared details and answered questions about upcoming Genentech/Roche clinical trials for HD. HDSA received hundreds of questions before, during, and after the webinar. Here HDSA’s staff scientists, with guidance from Genentech/Roche, have tried to address the ... Read more

Kids sometimes get Huntington’s disease too

Published date: 10 October, 2018

Juvenile-onset HD is really rare, but a new study has helped us understand what the symptoms are and how they change over time. This is really important and in time will help us work out whether huntingtin-lowering and other treatments work in kids. What is juvenile Huntington’s disease? When symptoms of Huntington’s disease start before ... Read more

Roche announces details of its 'pivotal' huntingtin-lowering study

Published date: 17 September, 2018

It’s a time of huge developments in the field of huntingtin-lowering drugs, which aim to reduce production of the huntingtin protein that causes Huntington’s disease. At the European Huntington’s Disease Network (EHDN) meeting this past week, Roche announced firm details of the first ever pivotal study of a huntingtin lowering drug – RG6042, which you ... Read more

Disappointing news from LEGATO-HD trial of laquinimod in Huntington's disease

Published date: 2 August, 2018

The LEGATO-HD trial of laquinimod to slow progression of Huntington’s disease did not meet its primary endpoint. What’s an endpoint, and what does this all mean for HD families? What was the Legato-HD trial all about? The Legato-HD trial was designed to test whether treatment with a drug called Laquinimod could slow the progression of ... Read more

HDBuzz Enrolls in Enroll-HD

Published date: 31 July, 2018

The Enroll-HD study is the largest clinical study in Huntington’s Disease ever. What’s it all about, and why is Enroll-HD so important in the fight against HD? Join HDBuzz’s own Jeff Carroll as he joins the Enroll-HD study to learn more. What is observational research? In some ways, HD is very simple – if you ... Read more

First Dolly, now Piglet; a new Huntington’s disease pig knock-in model confirmed

Published date: 10 July, 2018

Exciting news for the HD research field this month as a new genetically faithful model has been created in pigs. Using a combination of cutting edge DNA editing tools researchers were able to generate HD pigs that not only replicated the selective brain cell death seen in HD, but also a broad range of symptoms ... Read more
Round hand chain

New collaboration seeks to speed Huntington's disease drug licensing

Published date: 10 May, 2018

Recently the Critical Path Institute announced a new effort – the Huntington’s Disease Regulatory Science Consortium, or HD-RSC. This collaboration with many international partners aims to speed the development of new HD treatments. What’s all this about, and how could it help HD patients? What is C-Path? The Critical Path Institute is likely new to ... Read more

HDSA’s Q&A on the latest huntingtin-lowering update from Ionis and Roche

Published date: 26 April, 2018

Earlier this week, Ionis Pharmaceuticals put out a press release after presenting data from the HTTRx (RG6042) Huntingtin-lowering clinical trial program at a scientific conference. Ionis’ partner Roche also released a community statement. Our friend at Huntington’s Disease Society of America, Dr Leora Fox, has prepared this Q&A in response to community questions received after ... Read more