Interview Study for Parents and Adolescents about Genetic Risk

Posted on April 5, 2018

If you are 15-17 years old or are the parent of a 15-17 year old, consider participating in an interview study with researchers at Johns Hopkins on communicating about genetic risk for Huntington’s disease. The 45-minute interview can be conducted by Skype or phone from anywhere in the USA, and each participant will be given a $40 Visa gift certificate as compensation for their time. The researchers want to gain a better understanding of how parents and children feel about genetic risk/status, how it is communicated, and how it influences well-being and family relationships. Parents must be at-risk for HD, affected by HD, or be the spouse/partner of someone who is at-risk or affected by HD. They must have a child ages 15-17 who are at-risk for HD. Children must be 15-17 years old and have a parent who meets the above criteria. Both parents and children will be asked questions about how they learned and communicated about genetic risk, and their feelings about it. To participate please call Kelsey Stuttgen at 410-614-5581 or email kstuttg1@jhmi.edu.

Gene Veritas Interviews Roche representatives about the upcoming huntingtin-lowering trial

This week, Gene Veritas, at-risk HD advocate and blogger extraordinaire, published an interview with three key representatives from Roche, the pharmaceutical company that will be taking over the Ionis huntingtin-lowering trial. It’s a great read – he shares the answers to lots of questions about how the HD team at Roche is gearing up to plan and conduct the Phase III trial of the promising potential drug. This will involve a “small army” of more than one hundred Roche employees. They stressed that care and accuracy at this step is their top priority: “what’s most important for us is doing the work to make sure that the pivotal study is going to answer all of the questions that need to be addressed.”

April 18th research webinar

HDSA holds monthly research webinars to share exciting HD research and new science with the community. These presentations are given by scientists in easily understandable language. On April 18th from 12-1pm EDT, Dr. Jack Reidling from the University of California, Irvine will discuss his work on introducing healthy stem cells to replace damaged ones in the brains of HD mice.  Register to attend the webinar here.

Posted in Our opinion, Weekly News
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