1800 244 735

Helpline (02) 9874 9777

Update from Huntington Disease Research Team at Westmead re COVID-19

We are posting this advice from the HD Research Team at Westmead.

2nd April 2020

Dear Community Members,

You might be wondering what is happening to the research and drug trials that are underway at Westmead Hospital, run by Dr Clement Loy and the Huntington Disease Research Team.

In these difficult days for everybody facing the challenges of COVID-19, the situation is changing so rapidly, it’s hard to know when to update you. But we didn’t want to leave you in the dark – we know how important research is to the HD community.

Here are the main points in brief.

  • We currently have participants in both gene-silencing/Huntington-lowering trials: Generation-HD, (run by Roche Pharmaceuticals), and Precision-HD, (run by WAVE Life Sciences). We are not recruiting any new participants for drug trials at the moment, both studies are fully recruited at our site.
  • We are continuing with both of these studies, but with some changes. We are acting in accordance with the recommendations to keep study participants, staff, their families and the general community as safe as possible.  In consultation with the study sponsors, we are focussing on the most important study visits meaning some visits may be missed. The Westmead staff are in touch with participants on a regular basis.
  • The Enroll-HD study has been suspended for at least 8 weeks. Staff at Westmead are in the process of informing all participants who have upcoming annual appointments. We are not recruiting new participants at the moment, but will likely welcome new people again once the pandemic is over.

Around the world, HD researchers are sharing their commitment to continue with the research studies, while following recommended measures to protect against COVID-19.

The team at Westmead send the entire HD community our best wishes at this difficult time. We will try to keep you up-to-date with what’s happening with HD research. Stay safe!

Share on facebook
Share on twitter
Share on pinterest
Share on email

Latest News and Stories

Neurological Alliance Australia Position Statement on Aged Care – Dec 2020

Published date: 13 January, 2021

Huntington’s NSW ACT is a member of the Neurological Alliance Australia on behalf of all State Associations. This Position Statement on Aged Care comes with an important reminder that over half of those with HD living in residential care are in aged care homes.

The Year That Was….

Published date: 8 December, 2020

As we approach the end of the year and the Christmas holidays we are all a little unsure whether we will be getting together with family members and loved ones to share the festive season in the way we always do. One thing we can be sure of is that we will look back on ... Read more
Person taking notes at a meeting

Community Survey 2020

Published date: 6 December, 2020

Participate by 31/12/20 for your chance to WIN a free weekends accomodation near Wollombi.
International Day of People with Disability logo

International Day of People with Disability

Published date: 2 December, 2020

We are committed to empowering people with HD to live their best possible life. We want to see all people impacted by HD treated with equity by governments, other institutions and their communities. #idpwd #disablestereotypes #advocacymatters #abilitynotdisability #huntingtonsdisease

Prof Elizabeth McCusker interview

Published date: 25 November, 2020

Special guest speaker at our 2020 annual general meeting to recognise her retirement after many years as both a clinical and research leader.

Hunt4Hope Op Shop

Published date: 17 November, 2020

The Hunt4Hope Shop is a self-funded business where Matina, the owner, chooses to give 100% of the profits to Huntington’s NSW ACT who helps those affected by Huntington’s Disease.