Westmead Fertility Centre (WFC) which is affiliated with Westmead Hospital and the University of Sydney offers PGD at a more affordable cost for those who would like to have an HD-free child.
The following is an approximate guide to the type of treatment costs, which are all inclusive, you can expect to pay.
An IVF cycle costs between $1,735–$5,085 at WFC but after Medicare refunds, out-of-pocket expenses are usually between $317–$1,586 for a first cycle. Additional Health Fund Insurance is not required to have treatment at WFC.
In addition, PGD charges billed by the Genetics Laboratory range from $2,250 – $3,000.
Huntington’s NSW is excited to announce that the Enroll-HD study is now up and running at Westmead Hospital. This international study presents an opportunity for all family members affected by HD to be involved in research. If you are interested in participating, contact the study coordinator, Therese Alting, telephone 9845 6310 or 0438 604 719 or email firstname.lastname@example.org. This is an observational study, and not a drug trial. For more information about the study visit www.enroll-hd.org
Huntington's disease (HD) is characterized by ongoing destruction of specific neurons within the brain. It affects a person's ability to walk, talk, and think - leading to involuntary movement and loss of muscle co-ordination. New research published in BioMed Central's open access journal Molecular Neurodegeneration shows that the RyanR inhibitor Dantrolene is able to reduce the severity of walking and balance problems in a mouse model of HD.
Prana Biotechnology Limited received a very positive reaction from international patient groups and researchers at this week's World Congress on Huntington's Disease in Melbourne. The company had a major presence at the Congress and the Prana team has held numerous meetings and conversations with patient groups and researchers.
Read the full story on the Market Watch website.
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. Data produced by all these researchers need to be made available sooner rather than later, so that others can build on what is already known. PloS is a new journal launched to speed up the process of scientific discovery in HD.
The traditional way to publish new findings is for researchers to send data with a ‘story’ to a scientific journal. A panel of experts then reviews that story, to judge whether the data and story are solid, and also whether the story is important enough to be interesting to the journal’s audience. This process is known as ‘peer review’.
This approach has advantages: it ensures that what is published is scientifically sound. Once published, articles can be retrieved via the internet sites like PubMed, and used by other scientists to guide and advance their own research.
However, there are several drawbacks, too. Firstly, the time between doing the research and the story being published can be very long. Sometimes the story has to be offered to several journals, one after the other, before it is eventually published. Several years can pass like this.
Secondly, most journals survive by selling copies, so they have to rate the importance of each story. Anything that might not be interesting to that journal’s audience is likely to be rejected, even if the story is scientifically sound.
That introduces bias to what’s available in the scientific literature. It favours exciting stories, but makes it difficult to publish solid, well-conducted scientific research if the results are less glamorous – for instance, if they show that a particular approach, idea or experiment has not helped. These are known as ‘negative results’.
Another problem is that a complete scientific ‘story’ might take five or ten years to research from start to finish. Along the way, interesting data might be produced, but because they don’t tell a complete story, they are unlikely to be published and seen by other researchers.
“Negative data”, or data that don’t make a complete story, can still be really useful to other researchers. For science to make progress, knowing what doesn’t work can be as useful as knowing what does.
Imagine ten researchers in different places, working on similar scientific projects, that could have been shown to be pointless already, if someone had published a single negative result. All that effort, time and money could have been put to much better use.
A new platform for publishing was launched in September 2010, aiming to make HD research more efficient by publishing the results that would otherwise never be seen, and shortening the time it takes to get data published.
This platform is called Public Library of Science (PloS) Current Huntington Disease and is supported by the CHDI Foundation.
The HD Outreach Service has now moved from Lottie Stewart Hospital at Dundas to Westmead Hospital. Please note their new contact details below:
Westmead Hospital HD Service,
Phone: 02 98459960
Researchers at the Department of Energy's Oak Ridge National Laboratory and the University of Tennessee have for the first time successfully characterized the earliest structural formation of the disease type of the protein that causes Huntington's disease. The incurable, hereditary neurological disorder is always fatal and affects one in 10,000 Americans.
New research sheds light on common pathogenic mechanisms shared by Huntington's disease (HD) and HD-like disorders. The study, published by Cell Press in the May 12, 2011, issue of the journal Neuron, uses a new transgenic mouse model for an HD-like disorder to unravel complex molecular events that drive disease pathology.