Summer Survey Extravaganza:
- What motivates someone to seek predictive genetic testing?
- What motivates someone to seek anonymous predictive genetic testing?
- The HD Experience: how does psychological therapy affect people with HD?
Summer Survey Extravaganza
Summertime means dodging heatwaves between beach days, ice cream sundaes, and now, online surveys! HDSA works with researchers around the world to find studies that allow you to participate in HD research from the comfort of wherever you have internet access…and air conditioning! Regardless of whether you are a person with HD, a care partner of someone with HD, at-risk for HD, a gene-negative member of an HD family, or a loved one of someone with HD, there is a research opportunity for you! Keep reading for the details of the latest additions to the list, or visit hdsa.org/hd-research/online-surveys for the full lineup of online studies available to you this summer.
What motivates someone to seek predictive genetic testing?
Researchers at the University of British Columbia invite you to participate in an online survey that aims to estimate the demand for predictive testing among the HD community and how this might be affected by future clinical trial results. The goal of the survey is to help our healthcare system, healthcare providers, clinicians, genetic counselors, and others involved better prepare for a potential surge in predictive testing demand and to in turn improve the quality of care given to patients and families affected by HD. The survey is open to individuals 18 or older who are already affected by HD, individuals at risk for developing HD, and individuals related to someone affected by HD (spouse/partner or family member). To learn more and take the survey, click here.
What motivates someone to seek anonymous predictive genetic testing?
Anonymous testing refers to measures that are taken to exclude identifying information about a person undergoing genetic testing so that their test results are not linked to their legal name or medical record. Researchers at the University of Texas Health Science Center Houston are conducting a study to better understand the motivations, barriers, and attitudes of pursuing anonymous genetic testing for HD. If you are at-risk for HD and have not undergone genetic testing, or you are an individual who has completed genetic testing for HD, you may be eligible to participate. This study involves completing an online survey which will take approximately 10-15 minutes to complete. This study is voluntary and anonymous. You can refuse to answer any questions asked on the survey. Participants will be entered into a drawing to win an Amazon gift card. To learn more about and take the survey, click here.
The HD Experience: how does psychological therapy affect people with HD?
Researchers at The University of Reading (UK) would like people living with Huntington’s Disease (HD) who have had experience with psychological therapy (whether successful or unsuccessful) to come forward and talk about their experience. If you are living at risk of Huntington’s, are presymptomatic or symptomatic, and have engaged with psychological therapy with a psychologist, you may be eligible to participate. The researchers are conducting interviews to gather different experiences and learn from participant insights what is and isn’t helpful in psychological therapy practice. If you have any experience with psychological therapy, are over the age of 18, have access to a computer and can speak and understand the English language, you may be eligible to participate. Please contact the researcher to arrange a convenient time to talk at firstname.lastname@example.org.