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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

Updates from PTC Therapeutics and uniQure on their huntingtin-lowering trials

Published date: 21 June, 2023

On 21st June, both PTC Therapeutics and uniQure shared data from their respective clinical trials, both testing huntingtin-lowering as an approach to treat HD, but with different types of therapies. In this article we go through the data they each presented, what it all means and the next steps the companies will be taking. Treating ... Read more

Huntington’s disease therapeutics conference 2023 – Day 3

Published date: 22 May, 2023

Welcome to the third and final day of HD science, live from Dubrovnik, Croatia! Our Twitter updates are compiled below. Continue to follow live updates for the final day of the conference with the hashtag #HDTC2023.nCheck out our coverage of Day 1 here: https://en.hdbuzz.net/343 and day 2 here: https://en.hdbuzz.net/344. Biomarkers This morning’s session will focus ... Read more

Start here!

Published date: 22 May, 2023

Welcome to HDBuzz! This special page is for people who are new to Huntington’s disease, or new to the world of HD research. Reading the articles linked here will help you pick up the basics of what Huntington’s disease is, and get up to speed with some of the most promising things scientists are doing ... Read more

Huntington’s disease therapeutics conference 2023 – Day 2

Published date: 4 May, 2023

Welcome to the second full day of HD science, live from Dubrovnik! After yesterday’s amazing basic science talks, today begins with a session focused on companies developing new experimental treatments for HD. Our Twitter updates are compiled below. Continue to follow live updates for the rest of the conference with the hashtag #HDTC2023. Check out ... Read more

Huntington’s disease therapeutics conference 2023 – Day 1

Published date: 26 April, 2023

Hello from Dubrovnik, Croatia, where the 2023 CHDI Therapeutics Conference will be taking place from Monday, April 24th, through Thursday, April 27th! This conference is a big one for HD researchers worldwide, from industry, academia, and nonprofit. Dozens of scientists will give talks on all things HD, from genetics, to therapeutics, to clinical trial news. ... Read more

PROOF-HD study of pridopidine ends with negative result

Published date: 25 April, 2023

Top line results of the PROOF-HD study, run by Prilenia Therapeutics and testing pridopidine, have been announced at the American Academy of Neurology convention. Sadly the trial outcome was negative. We recap the history of pridopidine in Huntington’s disease, review the trial results, and figure out where this disappointing result leaves us. The drug: pridopidine ... Read more

Astrocytes: The new star in HD research?

Published date: 19 April, 2023

The most obvious changes related to Huntington’s disease (HD) happen to neurons, the nervous system’s messenger cells that send and receive information throughout the brain and spinal cord. However, many different cell types are affected by HD. A recently published article reviewed research findings from various labs, describing how a specific type of brain cell, ... Read more

Roche Phase II GENERATION HD2 study underway

Published date: 14 February, 2023

Roche released a community letter last month, detailing how their Phase II clinical trial to study the huntingtin-lowering drug, tominersen, is now underway. Learn more about what this means in this article and at the recent HDSA Research Webinar, with representatives from the company. The ups and downs of huntingtin-lowering Tominersen is a type of ... Read more

Disappointing news from Novartis about branaplam and the VIBRANT-HD trial

Published date: 9 December, 2022

The pharmaceutical company Novartis has released a community update which announces that they are ending development of branaplam, a huntingtin lowering drug, for possible treatment in Huntington’s disease (HD). This news comes following recent bad news about side effects of branaplam in HD patients, being tested in the VIBRANT-HD clinical trial, dosing of which was ... Read more

Update on the PTC Therapeutics PIVOT-HD Trial

Published date: 2 November, 2022

Recruitment of participants into the US arm of the PTC Therapeutics PIVOT-HD trial has been paused. Since this announcement, there have been a lot of different (and confusing!) headlines about the pause in recruitment. In this article, we will lay out what is going on and what this announcement means. What is the aim of ... Read more