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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

An active lifestyle may make a difference to HD symptoms

Published date: 10 January, 2011

We all know that exercise and staying active are good for everyone, whether or not they are at risk of developing HD. A new study of lifestyle activities in people with the HD mutation suggests that staying active is even more important in HD, and that passive habits – especially during the teenage years – ... Read more

Frequently asked questions, January 2011

Published date: 7 January, 2011

The first in a monthly series of FAQ articles covering hot topics and burning issues in the science behind HD. What causes Huntington’s disease? HD (Huntington’s disease) is caused by a mutation in a person’s DNA. Your DNA is basically lots of instructions for building your body and keeping it running. DNA is organized into ... Read more

Getting the data out – a new scientific journal just for HD

Published date: 4 January, 2011

The search for better treatments for HD requires a lot of effort by researchers across the globe. Time is of the essence: the ideal time for a treatment for HD is yesterday. Scientific findings need to be made available sooner rather than later, so that others can build on what is already known. PLoS Currents ... Read more

Dimebon: disappointing in Alzheimer’s but might work in HD

Published date: 23 December, 2010

Dimebon, a drug developed in Russia as an anti-allergy medication, is under investigation as a possible treatment to improve thinking problems in HD. There was disappointment when a recent large trial of Dimebon to treat Alzheimer’s disease in the USA showed no benefit, but hope remains in HD where the DIMOND trial is continuing across ... Read more
Recycle Sign

Focused drug screening leads to improved drugs to increase the rate of cellular recycling

Published date: 16 December, 2010

Build-up of unwanted chemicals in cells is one way the HD mutation causes damage to neurons. A cellular recycling process called autophagy is crucial to getting rid of these harmful chemicals. Now researchers have found a way of identifying safe drugs that can increase the rate of garbage disposal in HD. Autophagy A large body ... Read more

Does HD cause brains to develop differently?

Published date: 6 December, 2010

It has long been known that HD causes brain shrinkage that can be detected using MRI scanning. But new findings from the PREDICT-HD study suggest that the brains of men with the HD might never reach the same size as the brains of people without the mutation during development. That suggests that the HD mutation ... Read more

Are there genetic connections between neurodegenerative diseases?

Published date: 1 December, 2010

A group of researchers working on ALS (Lou Gehrig’s disease) in yeast cells have found an unexpected genetic link between ALS and SCA-2, a disease in the same genetic family as HD. New links between these diseases might reveal new ways of approaching the search for treatments for diseases like HD. What are polyQ diseases? ... Read more

Is Huntington’s disease twice as common as we thought?

Published date: 27 November, 2010

In an article in the medical journal The Lancet, Sir Michael Rawlins claims that traditional estimates of how common Huntington’s disease is, might be dramatic underestimates. Why might this be, and what does it mean for the HD community and the search for effective treatments? Twice as common? Scientists and statisticians use the word ‘prevalence’ ... Read more

Two large HD observational studies – COHORT and Registry – merge to create ENROLL-HD

Published date: 24 November, 2010

When it comes to studying a disease that progresses slowly, like HD, there is strength in numbers. Studying many patients repeatedly over several years can give us powerful insights that can’t be gained through other research techniques. That’s why two of the largest observational studies, COHORT and REGISTRY are joining forces to form ENROLL-HD, the ... Read more
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Huntexil for symptoms of Huntington's disease: where are we now?

Published date: 16 November, 2010

2010 was a big year for the small Danish pharmacology company NeuroSearch and its experimental drug, Huntexil, which aims to improve the movements and coordination of people with HD symptoms. What have NeuroSearch’s two clinical trials – MermaiHD in Europe and HART in the USA – told us about the possible benefits of Huntexil – ... Read more