Summary

- Paid Interview Study Opportunity with Design Science 
- This Week in HD History: First Animal Models of HD  
- Help4HD Podcast Highlights a Research Participant’s Experiences  

Paid Interview Study Opportunity with Design Science 

Design Science is seeking opinions from people with HD and their partners about a new medical device used for swallowing medications. The current study is taking place in Philadelphia and Chicago and it involves a 45-minute paid, in-person interview. There is no medication or procedure; it simply involves looking at the device and answering some questions. Compensation is $350 for a person with HD, and an additional $125 for their accompanying partner. This is open to people diagnosed with HD at any stage.  

You can sign up for this study or to be notified of future opportunities, by going to www.dscience.com/signup, filling out your info, and writing “Huntington’s disease” in the box that asks what you want to learn more about. You can also email ihaveavoice@dscience.com and say you are interested in learning more about the Huntington’s disease study. 

This Week in HD History: First Animal Models of HD  

Animal models of HD allow us to gain a better understanding of the disease and explore potential new avenues to prevent or treat it. Even before the 1993 discovery of the gene, researchers were determined to come up with ways to study HD in the living brain. Before it was possible to create and study mice that had the HD mutation, scientists understood that people with HD had a very particular kind of damage to the brain. The area known as the striatum is responsible for movement, motivation, and mood, and in HD, these cells begin to get sick and disappear.  

In 1976, researchers were able to recreate this type of brain tissue damage in mice and observe “symptoms” that appeared similar to Huntington’s disease. This type of modeling was used widely for almost two decades until the first genetic mouse models were created in the mid 1990s. There are now many different animal models used to study HD, from worms, flies, and slime mold, to rodents, sheep, pigs, and primates. We owe a great debt of gratitude to these animals, and in combination with new methods and technologies, we are learning more about the vulnerability of the striatum in HD. 

Help4HD Podcast Highlights a Research Participant’s Experiences  

The SURVEYOR study is the second part of Sage’s PERSPECTIVE program, a series of studies to evaluate the safety and efficacy of SAGE-718, a drug taken by mouth that is aimed at addressing cognitive decline in HD and related neurodegenerative diseases. The SURVEYOR study aims to evaluate SAGE-718’s effects on real world tasks; the 28-day study protocol includes an optional driving simulation and virtual reality experiences to recreate tasks of daily living like cooking a meal, using transportation, shopping, or managing currency. Last week, the host of the Help4HD podcast, Lauren Holder, shared her take on why this drug matters for the HD community, and her experiences participating in the SUREVYOR study. To listen to the full episode, click here.