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

May
5
Wed
WEBINAR | Oral Care & Huntington’s: Keeping the mouth healthy
May 5 @ 7:00 pm – 8:30 pm
WEBINAR | Oral Care & Huntington’s: Keeping the mouth healthy

Free of charge | Open to everyone | Online

Together with Annette Carlsson, we’re running a webinar on how to maintain a healthy mouth and strong teeth in people with Huntington’s disease.

During the webinar Annette will talk more about how to manage oral health and demonstrate several tools that will make oral care easier in daily life. It is free of charge and open to everyone (both professionals and family members/carers).

Background:

One of the corner stones for Quality of Life is good oral health. For people with Huntington’s there are many problems that affects the oral health. Dry mouth as well as blisters and sores can cause pain and difficulties in eating, speaking and to perform oral care.  Toothache and lack of teeth affects even the mental status. Swallowing difficulties increase the risk of aspiration. It is of extra importance to maintain a good oral health and thereby minimize the risk of injurious bacteria reaching the lungs. 

Speaker: Annette Carlsson

Annette is a Dental hygienist at the Mun-H-Center and Hospital dentistry in Göteborg, Sweden. She’s also the chairperson of the Swedish Huntington Association.

___________

WHEN: 5. May, 19:00-20:30 Central European Time
PLATFORM: Zoom 
Registration will follow soon

Jun
19
Sat
VIRTUAL | European Academy of Neurology Congress
Jun 19 @ 8:00 am – Jun 22 @ 8:00 pm
VIRTUAL | European Academy of Neurology Congress @ ONLINE

The European Academy of Neurology (EAN) is hosting their 7th Congress in June 2021. This years theme: Towards Precision Neurology.

From Claudio L. Bassetti, EAN President:

“As the number of lives affected by the COVID-19 pandemic has now reached the millions, the health and safety of our congress attendees, our patients and our families, remains our primary concern.

While we may come from different nations, we are all experiencing difficult and trying times, and we must continue to work together to slow the spread of the disease.

With this situation in mind, the European Academy of Neurology has decided to go virtual again for the 7th EAN Congress on June 19-22, 2021, originally to be held in Vienna.

Once again, we look forward to offering you the opportunity to learn from experts in your field, grow your professional network, and discover the latest best practices in neurology, all in the comfort of your home. Building on our experience from the EAN Virtual Congress 2020, we will utilise the very best technical solutions to provide you with a virtual experience as comfortable and rewarding as the real thing.

In order to make participation affordable for colleagues all over the world, EAN is offering reduced fees for the virtual congress.

Please find detailed information on the EAN Congress Website.”

 

Registration is now open! 
Cost per ticket depends on whether you are a EAN member or not and your membership (student, researcher, etc.).

PROGRAMME

RECORDED WEBINARS

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