Huntington’s research in the time of COVID-19
We’ve had several queries asking for an update on Huntington’s research studies during COVID-19, so we approached Professor Hugh Rickards, Neuropsychiatrist from Birmingham and Solihull Mental Health NHS Foundation Trust, to give us the lowdown on the current state of Huntington’s research in the UK.
“Huntington’s research in the UK has been significantly affected by the COVID-19 pandemic. There are lots of reasons for this. The main reason initially was that many research nurses were immediately diverted from research work to front line clinical care. At the same time, most research departments in big hospitals diverted all their research efforts towards COVID-19 treatment and vaccination. This is not just the nursing and doctoring staff but all of the administrative support too. Finally, almost every hospital closed its doors to all except acutely ill patients.
The UK has been particularly badly hit for a variety of reasons, partly because the lockdown was relatively late in the UK and partly because of limited capacity within the health service. The good news from this is that the global Huntington’s trials have stayed on track for the most part. As an example, Germany has managed to keep all its research sites open and they have a lot of trial participants. We are not anticipating any significant delays in the reporting of results on the worldwide gene trials.
Now that the tsunami of COVID-19 is receding, we are starting to look around at what remains and get on with the rebuilding process. All the main Huntington’s researchers in the UK meet on a monthly basis (along with the Huntington’s Disease Association) to talk about problems and try and solve them quickly. Around the UK the picture is really variable, different towns and cities all have their own unique research environment. Many centres have had to pause their gene trials (although some have managed to continue treating) and all centres stopped the ENROLL-HD study initially. At our last meeting, the first site in the UK had just been given the green light to restart ENROLL-HD, so the rest of us are writing to our organisations with the message “if they can do it, why can’t we?!”
There has been some discussion about whether or not some of the ENROLL-HD study could be completed online but this is not going to happen at this stage, mainly because most countries have not had to pause their studies.
With the gene trials, there are still some hurdles for restart in some places. For instance, in Birmingham, the research facility is dedicated to the Oxford vaccination trial at the moment, a silver lining is that this study is going really well. Once the other non-COVID-19 trials are ready to get back into action, we will have to join an orderly queue with researchers looking at cancer, heart disease and range of other diseases who want to re-start their studies too.
In general, the picture is a hopeful one. There has been no indication from the main companies sponsoring clinical trials that there will be significant delays in getting any effective treatments to “market” because of COVID-19. Those of us in the community who are concerned with being able to access effective drugs once they are licenced are taking the time to really concentrate our efforts on this subject, which I think is still likely to be the highest hurdle to jump in the end.
As a community, we’re itching to “get started” again as soon as possible and we can see light at the end of the tunnel now.”
A massive thank you to Professor Rickards for supplying this update. We hope that this has put minds at ease and answered your questions.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
COVID-19 has had a dramatic effect on our way of life. This has significantly impacted our fundraising efforts, threatening our ability to help those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19
We’ve had several queries asking for an update on Huntington’s research studies during COVID-19, so we approached Professor Hugh Rickards, Neuropsychiatrist from Birmingham and Solihull Mental Health NHS Foundation Trust, to give us the lowdown on the current state of Huntington’s research in the UK.
“Huntington’s research in the UK has been significantly affected by the COVID-19 pandemic. There are lots of reasons for this. The main reason initially was that many research nurses were immediately diverted from research work to front line clinical care. At the same time, most research departments in big hospitals diverted all their research efforts towards COVID-19 treatment and vaccination. This is not just the nursing and doctoring staff but all of the administrative support too. Finally, almost every hospital closed its doors to all except acutely ill patients.
The UK has been particularly badly hit for a variety of reasons, partly because the lockdown was relatively late in the UK and partly because of limited capacity within the health service. The good news from this is that the global Huntington’s trials have stayed on track for the most part. As an example, Germany has managed to keep all its research sites open and they have a lot of trial participants. We are not anticipating any significant delays in the reporting of results on the worldwide gene trials.
Now that the tsunami of COVID-19 is receding, we are starting to look around at what remains and get on with the rebuilding process. All the main Huntington’s researchers in the UK meet on a monthly basis (along with the Huntington’s Disease Association) to talk about problems and try and solve them quickly. Around the UK the picture is really variable, different towns and cities all have their own unique research environment. Many centres have had to pause their gene trials (although some have managed to continue treating) and all centres stopped the ENROLL-HD study initially. At our last meeting, the first site in the UK had just been given the green light to restart ENROLL-HD, so the rest of us are writing to our organisations with the message “if they can do it, why can’t we?!”
There has been some discussion about whether or not some of the ENROLL-HD study could be completed online but this is not going to happen at this stage, mainly because most countries have not had to pause their studies.
With the gene trials, there are still some hurdles for restart in some places. For instance, in Birmingham, the research facility is dedicated to the Oxford vaccination trial at the moment, a silver lining is that this study is going really well. Once the other non-COVID-19 trials are ready to get back into action, we will have to join an orderly queue with researchers looking at cancer, heart disease and range of other diseases who want to re-start their studies too.
In general, the picture is a hopeful one. There has been no indication from the main companies sponsoring clinical trials that there will be significant delays in getting any effective treatments to “market” because of COVID-19. Those of us in the community who are concerned with being able to access effective drugs once they are licenced are taking the time to really concentrate our efforts on this subject, which I think is still likely to be the highest hurdle to jump in the end.
As a community, we’re itching to “get started” again as soon as possible and we can see light at the end of the tunnel now.”
A massive thank you to Professor Rickards for supplying this update. We hope that this has put minds at ease and answered your questions.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
COVID-19 has had a dramatic effect on our way of life. This has significantly impacted our fundraising efforts, threatening our ability to help those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19