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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

Disappointing Results from Wave’s PRECISION-HD1 and 2 Trials

Published date: 30 March, 2021

The Huntington’s Disease community faced more disappointing news this week as Wave Life Sciences shared that they will discontinue development of two ASOs they had been testing in people with HD. Designed to decrease harmful huntingtin protein while keeping the healthy form intact, these experimental therapies unfortunately did not have the expected huntingtin-lowering effect. Wave ... Read more

Sad News from Roche and Ionis – ASO Trial Halted Early

Published date: 23 March, 2021

Very sad news was announced today as Roche and Ionis declared that the large ASO study they’re running in Huntington’s disease patients has been halted early. Importantly, no specific new safety concerns were raised so far, but nevertheless dosing of the study drug, tominersen, as well as the placebo, has been stopped prematurely. What does ... Read more

Vaccines and HD

Published date: 25 February, 2021

Families around the world are being impacted by COVID-19, but hope is on the horizon in the form of revolutionary new vaccines which were developed in record time. How is the coronavirus impacting HD families, and should they be worried about any of the vaccines coming to market? Should HD patients get the vaccine? We’ll ... Read more

GPR52: Exploring a new way to lower huntingtin

Published date: 11 February, 2021

Scientists have found new leads for how to reduce the levels of the Huntington’s disease (HD) protein by targeting a protein called GPR52. A team of researchers working in Shanghai, China developed small drug-like molecules which lower huntingtin protein levels in HD tissue culture models and in HD mouse models. Treatment with their molecules was ... Read more

Updates from the EHDN Plenary Meeting 2020

Published date: 8 January, 2021

In September, the European Huntington’s Disease Network (EHDN) hosted a virtual webinar event which comprised presentations on some of the latest scientific research as well as clinical studies of Huntington’s disease (HD). Researchers, doctors, patients and other interested folks, tuned in for an afternoon of talks as well as question and answer sessions to learn ... Read more

Uncovering the dark side of DNA repair to design HD treatments

Published date: 22 December, 2020

A gene known as ‘MSH3’, which encodes a protein involved in fixing and maintaining our DNA, has become a hot topic in Huntington’s research since being implicated as a key driver of the disease by multiple genetic studies. In a recent publication, a team of scientists from the National University of Ireland, Galway, have provided ... Read more

Huntington Study Group (HSG) 2020 Annual Conference: HD in Focus – Day 2

Published date: 1 November, 2020

The second day of the HSG conference was another busy day of presentations from HD researchers and clinicians. The day kicked off with a talk from Vaccinex who gave us an overview of their work on the SIGNAL clinical trial. Unfortunately, pepinemab, the medicine tested in this trial, did not influence HD symptoms and the ... Read more

Huntington Study Group (HSG) 2020 Annual Conference: HD in Focus – Day 1

Published date: 30 October, 2020

The Huntington Study Group (HSG) is a clinical research network focused exclusively on HD. Yesterday the HSG annual conference began with a schedule jam-packed with virtual talks from researchers, clinicians and different companies who are all working towards finding new medicines for HD. The day encompassed many interesting presentations which covered a lot of the ... Read more

Treatment for neurological disorder could be repurposed for Huntington’s disease patients

Published date: 22 October, 2020

While developing a drug called branaplam for patients with SMA, the pharmaceutical company Novartis discovered that it could hold promise for people with HD. The FDA has granted a special status called Orphan Drug Designation to branaplam. An existing drug…for huntingtin lowering? The pharmaceutical company Novartis has announced that the U.S. Food and Drug Administration ... Read more

Sad news from the SIGNAL study: pepinemab does not influence HD symptoms

Published date: 23 September, 2020

The SIGNAL clinical trial was designed to test a drug called pepinemab in people with early Huntington’s disease. The key results of that trial were recently announced, and unfortunately, pepinemab did not slow or improve HD symptoms as hoped. What was the SIGNAL trial, and who participated? The SIGNAL trial was launched in 2015 by ... Read more