Research articles

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HDBuzz are 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.

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. How? By bringing 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.

Words from HSG website.

How NSW contributes to research

Westmead Hospital is a HSG Credentialed Research Site
Enroll-HD
Huntington’s NSW ACT Research grant
Update from the research team re: covid-19

More information coming soon.

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

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

Start here!

Published date: 11 December, 2018

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

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

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Research articles

Global research collaboration

How NSW contributes to research

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

Huntington's disease therapeutics conference 2019 – Day 3

Huntington's disease therapeutics conference 2019 – Day 2

Huntington's disease therapeutics conference 2019 – Day 1

Huntington's disease goes viral as UniQure inches ahead in gene therapy race

Start here!

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

HDSA FAQ on the Roche/Genentech RG6042 program

Kids sometimes get Huntington’s disease too

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

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