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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!

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