COVID-19 IMPACT ON RESEARCH & TRIALS​

While researchers may not be going into lab every day, they’re still hard at work to combat this disease. They may not be doing experiments at the bench, but they’re reading papers to develop their next idea, compiling data to better understand HD, and writing papers to disseminate what they’ve learned to the world. The labs may be quieter, but HD researchers are still hard at work in their fight against HD.

With many countries’ entire healthcare systems turned over to providing care for people with COVID illness, and many doctors and nurses diverted from research into frontline care, an impact on Huntington’s disease clinical trials is inevitable. However, all those involved are doing everything they can to minimize the impact and carry on with whatever trial activity they can.

In practice, the impact will vary quite a bit from one site to another, and from one trial to another. Some sites may still be enrolling new patients, while many will be forced to pause recruitment of new participants and focus on continued care and dosing of patients already involved. Many sites will likely convert onsite trial visits into telephone calls, or postpone visits until it is safer to carry them out in person.

Decisions about what activity can carry on are largely determined locally, by the hospitals and local and national governing bodies that direct healthcare resources. Trial sponsors (companies like Wave, Roche and UniQure) fund, support and organize the trials. So far, all the trial sponsors we’ve heard from have indicated that they continue to be committed to running and completing the trials despite the interruption the viral pandemic may cause. Learn more at www.HDBuzz.net. 

COVID-19

Information from WHO

COVID-19 IMPACT ON PEOPLE AFFECTED BY HUNTINGTON'S

In Italy, Scotland and Belgium the impact of COVID-19 have been studied. Isolation, concerns, pressure, but also closeness to beloved ones and support. Learn more about how Huntington families are affected and why support is so important. 

READ ARTICLE HERE.

Families

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In Italy, LIRH studied change in overall comfort amongst family members and the effect of providing assistance.
Results

Young People

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The Scottish Huntington's Association studied the impact of COVID-19 on young people living with Huntington's.
Results

Care Home Residents

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The care home, Home Marjorie, studied well-being amongst their residents in Belgium.
Results

VIRTUAL EVENTS
There are many things you can join from the comfort of your own home

EVERY TUESDAY
Virtual Hangout

by HDYO (Huntington’s Disease Youth Organisation)

Every Tuesday 
13:00 CET
Follow HDYO on social media for links to events

ONCE A MONTH
eHuntington Café (Italian)

by NOI

16:00 CET
Contact NOI for more information at info@lirh.it

Dec
8
Thu
WEBINAR: Access to health care services and support for HD patients in Europe
Dec 8 @ 3:00 pm – 4:00 pm
WEBINAR: Access to health care services and support for HD patients in Europe

Earlier this year we conducted an online survey trying to draw the European map of access to support and care for HD families and use this to advocate for good access for everyone affected by HD. 👏 We are proud to share that this survey was filled up by 800 HD family members and healthcare professionals from 31 countries.

The survey results will be presented in a Webinar by Filipa Júlio, on Thursday December 8 at 3 – 4 pm CET. After her presentation, we will open a Q&A and discussion session about what the results mean and how to best make use of them.

➡️ Register now for the webinar

RECORDED WEBINARS

Did you miss any of our live webinars?
Watch them here.