Tominersen development continues, Research participation

Continued development of Roche’s huntingtin-lowering drug tominersen 

Last week, Roche published the results of the GENERATION HD1 study that closed in March of 2021. The conclusions drawn from the data are unchanged, but peer-review and publication in an esteemed medical journal is important. This supports the progression of HD science and allows us to recognize the contributions of over 800 individuals who participated in this study and their families. The HDBuzz team broke down the publication for us in their most recent article, which you can read here.  

HDYO board members, Dr. Lauren Byrne and Ashley Clarke, also hosted a conversation exploring this publication and what’s next for tominersen, as part of their Breaking Down Barriers video series. This virtual event was a casual chat with Dr. Peter McColgan who leads the clinical program in Huntington’s disease at Roche so that folks can better understand the news and the ongoing development of the huntingtin-lowering drug. Check it out here.   

Finally, the Huntington Study Group shared a press release announcing some important news about the ongoing GENERATION HD2 trial. HSG has now partnered with Roche to support the recruitment and enrollment of this ongoing study testing the safety and effectiveness of the huntingtin-lowering drug tominersen. HSG manages a large network of study sites that cater to HD clinical research, and the organization has extensive experience with running HD trials smoothly and effectively with HD families’ needs in mind. To read the full press release about the new partnership, click here. You can learn more about the GENERATION HD2 trial on Roche’s site here, and you can visit https://hdtrialfinder.org/hdsa/trial/381935/ for more information on participation and locations.  

More research participation opportunities 

Want to lend your voice to HD research? Consider two compensated study opportunities that you can participate in from home.  

• For those who have done through genetic testing for HD: Jenny Winterbottom is a current graduate student at Ohio State, working with the genetic counselor, Victoria Klee, MS GCG and Dr. Sandra Kostyk of the OSU Neurology Department. She would like to invite everyone who has been through the genetic testing process (regardless of your result) to participate in an online survey for a research project entitled “An Investigation of Patient Preferences of genetic testing result disclosure for Huntington’s Disease in the context of the 21st Century Cures Act”. The researchers’ goal for this project is to learn more about patient preferences on how they receive their genetic test results for Huntington’s Disease. After completion of the survey, you can enter your email in the anonymous survey link to receive a $10 Amazon gift card. Please click here to view a description of the study and to access the survey.  

• For those living with late-stage HD or supporting or caring for a loved one with late-stage HD: Open Inclusion, a disability-inclusive research organization operating in the UK and USA, are recruiting 24 people with Huntingdon’s disease to take part in a one or two-part research study. In the first stage, (lasts 1 week) you’ll create some videos of a few minutes each telling us about your life and your use of digital smartphones or tablets. In the second stage, (lasts 2 weeks) you’ll be given a new Apple or Google tablet and asked to create some more short videos showing us how you use the tablet in your daily life. 
   
  OpenInclusion will pay $300 for the first phase and $200 plus a new digital tablet (which you can keep) for the second stage. For people who need carer support to do this, OpenInclusion will pay an additional incentive to recognize their help. Support and alternatives are offered in how you can provide insights. If you find it difficult to take or upload videos yourself – OpenInclusion will work with you to find a solution. The only requirements to enter this study are that you are over 18, live in the USA or Canada, use smartphones or tablets, are open to digital solutions from major technology brands and have Huntingdon’s disease. If you’d like to know more, please contact Cathy Rundle at cathy@openinclusion.com.