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