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

Coronavirus disease (COVID-19) is an infectious disease caused by a newly discovered coronavirus.

Most people infected with the COVID-19 virus will experience mild to moderate respiratory illness and recover without requiring special treatment.  Older people, and those with underlying medical problems like cardiovascular disease, diabetes, chronic respiratory disease, and cancer are more likely to develop serious illness.

The best way to prevent and slow down transmission is be well informed about the COVID-19 virus, the disease it causes and how it spreads. Protect yourself and others from infection by washing your hands or using an alcohol based rub frequently and not touching your face. 

The COVID-19 virus spreads primarily through droplets of saliva or discharge from the nose when an infected person coughs or sneezes, so it’s important that you also practice respiratory etiquette (for example, by coughing into a flexed elbow).

At this time, there are no specific vaccines or treatments for COVID-19. However, there are many ongoing clinical trials evaluating potential treatments. WHO will continue to provide updated information as soon as clinical findings become available.

Stay informed:

To prevent infection and to slow transmission of COVID-19, do the following:

  • Wash your hands regularly with soap and water, or clean them with alcohol-based hand rub.
  • Maintain at least 1 metre distance between you and people coughing or sneezing.
  • Avoid touching your face.
  • Cover your mouth and nose when coughing or sneezing.
  • Stay home if you feel unwell.
  • Refrain from smoking and other activities that weaken the lungs.
  • Practice physical distancing by avoiding unnecessary travel and staying away from large groups of people.

COVID-19 affects different people in different ways. Most infected people will develop mild to moderate illness and recover without hospitalization.

Most common symptoms:

  • fever.
  • dry cough.
  • tiredness.

Less common symptoms:

  • aches and pains.
  • sore throat.
  • diarrhoea.
  • conjunctivitis.
  • headache.
  • loss of taste or smell.
  • a rash on skin, or discolouration of fingers or toes.

Serious symptoms:

  • difficulty breathing or shortness of breath.
  • chest pain or pressure.
  • loss of speech or movement.

Seek immediate medical attention if you have serious symptoms.  Always call before visiting your doctor or health facility. 

People with mild symptoms who are otherwise healthy should manage their symptoms at home. 

On average it takes 5–6 days from when someone is infected with the virus for symptoms to show, however it can take up to 14 days. 

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

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

Young People

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

Care Home Residents

>>
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

Sep
29
Tue
WEBINAR | How Can We Develop and Implement Evidence Based Rehabilitation in Rare Disorders?
Sep 29 @ 3:00 pm – 4:00 pm
WEBINAR | How Can We Develop and Implement Evidence Based Rehabilitation in Rare Disorders?

Free of charge | Open to everyone | 15:00 CEST

Speaker: Hortensia Gimeno

Gimeno is Clinical Research Fellow at NIHR and PhD Candidate at King’s College London and Consultant Occupational Therapist at Guy’s and St Thomas’ NHS Foundation Trust.

SIGN UP HERE! 

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Oct
8
Thu
WEBINAR | Oral Care & Huntington’s: Keeping the mouth healthy
Oct 8 @ 11:00 am – 12:30 pm
WEBINAR | Oral Care & Huntington's: Keeping the mouth healthy @ ONLINE

Free of charge | Open to everyone | Online

Together with the Huntington´s Disease Association of Cyprus and 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 we will discuss 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 a board member of the Swedish Huntington Association.

___________

WHEN: 8. October, 11:00-12:30 CEST
PLATFORM: Zoom 
REGISTRATION: REGISTER HERE

 

Oct
13
Tue
WEBINAR | Diagnostic Algorithm for Childhood Onset Chorea
Oct 13 @ 3:00 pm – 4:00 pm
WEBINAR | Diagnostic Algorithm for Childhood Onset Chorea

Free of charge | Open to everyone | 15:00 CEST

Chorea denotes movement disorders. The term is derived from the Ancient Greek “choreia” meaning “dance”. The most common inherited cause of chorea is Huntington’s disease, which formerly was called Huntington’s chorea. However, it was renamed because of the many important, non-movement features characterising the disease.

Speaker: Juan Dario Ortigoza-Escobar

Ortigoza-Escobar is a pediatric neurologist from the Hospital Sant Joan de Déu in Barcelona, Spain. He is specialised in movement disorders such as dystonia, Parkinsonisms, chorea, tremors, myoclonias, tics/Tourette syndrome and deep brain stimulation.

SIGN UP HERE!

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Oct
20
Tue
WEBINAR | Recommendations for Physical Therapy for Huntington’s disease
Oct 20 @ 3:00 pm – 4:00 pm
WEBINAR | Recommendations for Physical Therapy for Huntington’s disease

Free of charge | Open to everyone | 15:00 CEST

Speaker: Bernhard Landwehrmeyer

If you have attended any Huntington’s disease conference, congress or seminar, you have probably seen Bernhard Landwehrmeyer there. He is one of the founders of the European Huntington’s Disease Network (EHDN). Since 2011, Landwehrmeyer is the Principal Investigator of Enroll-HD, a worldwide, observational Huntington disease study for Huntington families. He also directs the Huntington’s disease center at Ulm, a center providing genetic counselling, as well as rehabilitation for Huntington affected families along with basic and translational science.

SIGN UP HERE!

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Dec
1
Tue
WEBINAR | Functional Movement Disorders: a Diagnostic Guide
Dec 1 @ 3:00 pm – 4:00 pm
WEBINAR | Functional Movement Disorders: a Diagnostic Guide

Free of charge | Open to everyone | 15:00 CET

Speaker: Christos Ganos

Ganos is a neurologist and senior lecturer at the Movement Disorders and Neuromodulation Unit at the Charité, University Medicine in Berlin. His clinical and research focus is on movement and neurodegenerative disorders.

SIGN UP HERE!

This is part of a joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).