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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

A new roadmap to track Huntington’s disease progression

Published date: 15 June, 2022

For those who were following the live tweets from HDBuzz about the CHDI HD Therapeutics Conference or tuned in to the HDSA Convention, we may have caught your attention with the new HD staging system. And if you missed it, you’re in luck! The publication detailing this new classification system, how it’s used, and its ... Read more

Revisiting vitamin therapy for HD

Published date: 19 May, 2022

A research group in Spain is planning a clinical trial to explore if biotin and thiamine supplementation may help treat motor symptoms of Huntington’s Disease. This strategy emerged from their observations that some protein changes in both mice and people with the HD gene mutation resembled those seen in another rare brain disorder, biotin-thiamine responsive ... Read more

A spoonful of branaplam helps the huntingtin go down

Published date: 16 March, 2022

Scientists at Novartis and The Children’s Hospital of Philadelphia have recently published a paper detailing how the drug branaplam, originally developed for the neurological disease spinal muscular atrophy (SMA), could be repurposed to treat Huntington’s disease. Branaplam can lower levels of the huntingtin protein and is now being tested in the clinic in a phase ... Read more

Huntington’s disease therapeutics conference 2022 – Day 3

Published date: 8 March, 2022

Good morning! Today is the 3rd and final day of the #CHDI HD Therapeutics Conference in Palm Springs. Follow our feed today to get live updates! Biomarkers and clinical tools The fourth session of research talks will cover biomarkers and clinical tools for diagnosing, tracking, and treating HD. It is being introduced by Dr. Edith ... Read more

Huntington’s disease therapeutics conference 2022 – Day 1

Published date: 3 March, 2022

Good morning from sunny Palm Springs! After a 2-year hiatus because of COVID, the HD Therapeutics Conference is back in person this year – the biggest annual gathering of HD researchers! Our Twitter updates are compiled below. Continue to follow live updates for the rest of the conference with the hashtag #HDTC2022. Day 1 is ... Read more

Huntington’s disease therapeutics conference 2022 – Day 2

Published date: 3 March, 2022

Good morning and welcome to Day 2 of HDBuzz coverage of the CHDI HD Therapeutics conference! Innovative approaches for HD therapeutics Chairing the third session of HD research talks is Dr. Michael Finley (CHDI) and Dr. William Martin (Janssen R&D, LLC) are chairing the third session of HD research talks, which will cover innovative approaches ... Read more

Shining a spotlight on huntingtin: a tool to measure huntingtin-lowering in real time

Published date: 17 February, 2022

A recent addition to the Huntington’s disease research toolkit lets us “see” how well huntingtin lowering drugs are working in the brains of HD animal models. An international collaboration of scientists from Belgium, Germany, the U.S.A. and the U.K. tested their recently developed tool, called a PET ligand, in HD mouse models. When these mice ... Read more

BAC to basics: a more accurate mouse model for Huntington's disease

Published date: 10 February, 2022

A Californian research group has made a new mouse model of Huntington’s disease that is much more like human HD than ever before. How could it help us work out exactly how the mutation causes HD in people? CAGs and repeat instability Huntington’s disease (HD) is caused when three DNA ‘letters’ – C, A and ... Read more

Oral drug may change the story for huntingtin lowering

Published date: 1 February, 2022

Huntingtin lowering has gained lots of attention in HD research, and for good reason. It was the first potential treatment designed to directly target the cause of HD – the huntingtin protein. But there are limitations to current huntingtin lowering approaches: they require delivery to the spinal fluid or brain surgery for delivery, can show ... Read more

Finding the silver lining: an update on the Roche GENERATION-HD1 trial data

Published date: 21 January, 2022

On January 20th, Roche shared a set of long-awaited data from the GENERATION-HD1 trial of tominersen, a huntingtin-lowering drug. Although the trial did not meet its key goals, and too-frequent dosing may even have made patients worse, new findings have given us some cause to hope that tominersen could still benefit certain people with HD. ... Read more