News from EHA – read about Palm Springs, HD-COPE and more

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Tekst Palm Springs

Last year EHA gathered 40 bikers to participate in ‘HD on the Bike’ in Liège, Belgium! we want to repeat the success this year, and hope that even more people will join us in Frankfurt, Germany on May 1st 2019.
The one-day race is called SKODA Velotour, and more than 5000 amateur cyclists will participate. We will race together as a ‘HD on the Bike’ team, aiming to raise awareness and tear down the stigma surrounding Huntington’s Disease!
We would love for you to join our team, you don’t have to be super fit to participate, and there are 3 distance categories to choose from;
1) 50 km (250 meters in elevation)
2) 90 km (900 meters in elevation)
3) 105 km (1,200 meters in elevation)
You can read more about the race here or register here.
We would also love for you to join our facebook HD on the Bike group, and Facebook HD on the Bike Event



On March 21st. 2019, Roche announced that the procedures in huntigtin lowering trial Generation HD will be changed. Instead of a monthly lumbar puncture, the participants will be injected every two months.

The decision was based on the analyzes of data form the ongoing Open Label Extension study, with 46 participants form the first Ionis trial.
All participants were given the active drug for at least 9 months, but the investigators found sufficient evidence to conclude that there is no benefit in monthly dosages versus bimonthly.
This means that the trial procedure is likely to be less burdensome for participants, as well as for the clinical sites.

Read the full Roche announcement here


A research group from the University of Coimbra – Portugal has developed a novel non-immersive virtual reality task, EcoKitchen, with the aim of quantitatively assessing the earliest cognitive and functional changes shown by Huntington’s disease affected individuals.

EcoKitchen, a computerized task that involves the preparation of simple meals in a simulated kitchen along three blocks with an increasing difficulty level, was designed to provide a more realistic testing ground to assess the subtle alterations that early manifest and premanifest HD individuals often present in their everyday life activities, such as household tasks.
Importantly, the research team found that this new performance-based tool was able to signal the daily-life difficulties experienced by individuals that tested positive for HD but who do not yet present clinically significant HD symptoms.
This has relevant implications for HD cognitive and functional assessments, as more conventional methods often fail to document the executive problems exhibited by premanifest HD individuals and their influence in the performance of routine activities such as meal preparation. Furthermore, the early detection of HD related changes will facilitate the planning of tailored interventions aimed at rehabilitating and/or compensating the impaired cognitive and functional skills, and, therefore, will improve the quality of life of those affected by HD.
This work was first presented at the European Huntington’s Disease Network 2016 Plenary Meeting in The Hague -The Netherlands, where it received the Best Clinical Poster Award. It was also presented at the European Huntington Association 2017 Meeting in Sofia - Bulgaria.

Read the full "Frontiers in Psychology" article here   



The HD-COPE committee held its second annual meeting in the Big Apple, February 21-24, 2019. This year the committee welcomed members from Africa, Australia, China and South America. Now making it an international power house in the HD community. 

Written by Dina de Sousa, member of HD-COPE 

HD-COPE, the Huntington’s Disease Coalition for Patient Engagement, was formed last year and met for the first time in London. 

Read more:HD-COPE's first meeting
This year the second annual meeting was in NYC and the team expanded to include members from Africa, Australia, China and South America. Expanding its wings to reach Huntington disease (HD) families in the all corners of the world.

Plans for the future
HD-COPE is a global coalition to give families who are affected by HD a direct and impactful voice in HD clinical research.
In New York, the coalition had four days of brain storming, team building, presentations and meeting with two pharmaceutical companies: Roche Pharmaceuticals and Wave Life Sciences. 
The two companies is currently testing different approaches to lower the level of mutant Huntingtin protein. 
During the meetings, it was forward planning into the future with their clinical trials.

Families - the ultimate experts
Up until recently pharma would have these discussions among themselves and come up with what they thought were reasonable solutions. 
But who are the experts in a disease? Pharma may know the science, but families are the ultimate experts. 
And with HD being such a complex disease this is even more so. Unless you are living with the disease or caring for someone it is very hard to understand the magnitude of what goes on. 



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Publisert 05.04.2019 15:59:47

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