Summary
- Happy Holidays from HDSA : Research Wrap-Up
- A Realistic and Unapologetic View of HD: Exploring Impact of Gene Veritas
- Home for the Holidays? Participate in Online Research!
Happy Holidays from HDSA
Despite 2022’s ups and downs in HD research, HDSA has found plenty to celebrate, especially all of you in the HD community whose commitment to a world free of HD allows HDSA to fight for the community. To review this year in HD research and things to look forward to in 2023, check out HDSA’s annual research report, The Marker, as well as HDSA’s 2022 research webinars, available on our YouTube channel.
A Realistic and Unapologetic View of HD: Exploring Impact of Gene Veritas
A recent article from HD advocate Ken Serbin, evaluates his blog, At Risk for Huntington’s Disease, published under the pseudonym, Gene Veritas. Since its debut in 2005, the blog has shared challenges of living at risk for HD, news that most effects the community, research updates, and more. To learn more about At Risk for Huntington’s Disease and the impact it has had on the HD community, click here. To check out the blog, visit https://curehd.blogspot.com/.
Home for the Holidays? Participate in Online Research!
Are you interested in participating in HD research, but uncertain where to start? How about at home! Scientists around the world are seeking your input for online surveys that can be completed from the comfort of anywhere you have access to the internet. These studies observe the impacts of HD and nuances of the disease on the lives of the people it effects—including caregivers, family members, and partners of people with HD in addition to individuals with the disease. To see a complete list of online studies vetted by HDSA, click here. For details on the newest studies available to you this holiday season, keep reading!
Considerations for Rare Disease Clinical Trial Participation
Engage Health, Inc. is partnering with IndoUSrare and the Ginkgo Leaf Rare Disease Family Care Center to better understand the motivators and deterrents for rare disease patients and their caregivers when considering participation in a clinical trial. The knowledge learned from these 15-minute surveys will be used to educate pharmaceutical companies about what factors are most important to consider when recruiting for a clinical trial. To learn more and see if you are eligible to participate, click here to access the informed consent and to begin the survey.
How might support partners influence the predictive genetic testing process?
Genetic counseling for at-risk individuals exploring the option of testing for Huntington’s Disease often encourages the presence of a support person. However, there is little information on how the support person, particularly when they are a romantic partner, impacts the at-risk individual. Researchers at Stanford University are conducting an online research study that aims to determine what factors may contribute to a romantic support person having a positive or negative psychological effect on the at-risk individual, and also how they impact the decision of whether or not to pursue testing. If you are an at-risk individual who is currently going through genetic counseling or who has spoken with a genetic counselor in the past 2 years, you may be eligible to contribute. Click here to learn more.
Interview Study seeking voices of HD caregivers aged 18-28
Researchers at Boston University are seeking perspectives from adult children who are one of the primary caregivers for a parent who is symptomatic with HD. This will involve an interview; the group is interested in hearing your story — how you came to be providing care for your parent, what caregiving looks like for you, and how caring for your symptomatic parent may have influenced personal decisions regarding genetic testing for HD. The researchers also hope to learn about any advice you’d wish to share with other adult child caregivers, genetic counselors, or even policymakers. The survey is open to individuals who are English speaking, age 18 to 28, identify as one of the primary caregivers for a symptomatic parent with HD, and have heard of the option of genetic testing for the HD gene (HTT). To learn more, click here.
Speech Language Pathology Interview Study for Individuals affected by HD and Caregivers
A Speech-Language Pathology graduate student (Paige Wikman) and her professor (Dr. Therese O’Neil-Pirozzi) at Northeastern University in Boston are doing an IRB-approved study to explore perspectives of individuals with Huntington’s Disease and their caregivers in areas of quality of life and eating/swallowing (link to study flyer).
They are interested in how self-reports of individuals with Huntington’s Disease compare to those of their caregivers in these areas. If you have a medical diagnosis of Huntington’s Disease, you and a caregiver who knows you well, may be eligible to participate in this 20-30-minute-long study.
If you are interested in participating or would like to know more about this study, click here to schedule a time with Paige or email her at (wikman.p@northeastern.edu) for more information.
