Help Us Learn More

 

Researchers, clinicians and other HD healthcare professionals frequently use anonymous surveys to solicit input from people with HD, people at risk for HD, family members, and care partners about topics like genetic testing, HD symptoms and clinical trial participation. The results of these surveys are used to help shape best practices in HD care and future research strategies. Here you will find information on surveys being performed by the HD research community that would benefit from your feedback, and that you can complete from anywhere you have access to the internet.

The Huntington’s Disease Society of America (HDSA) works with researchers and students to review survey materials and Institutional Review Board (IRB) approvals and we only provide links to approved surveys. These are updated frequently on HDSA’s website. Eligibility varies, but usually there are opportunities for anyone in an HD family, whether you’re an affected individual, caring for someone with, living at risk, a young person in an HD family, and more. If you have a question about our vetting process, or you are a researcher with a survey to share, please contact Leora Fox, PhD, Assistant Director, Research & Mission Programs, at LFox@hdsa.org, or Kelly Andrew, Coordinator, Research & Mission Programs, at KAndrew@hdsa.org. If you have a question about any of the surveys listed here, please contact the study coordinators directly.

Current Surveys

Narrative Perspectives, Experiences, and Advice from Adult Children who are Caregivers of a Parent Symptomatic with Huntington’s Disease

Researchers at Boston University invite you to participate in a ~45 minute interview in which you can share your story as an adult child who is one of the primary caregivers for your parent symptomatic with Huntington Disease. We’re 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 pursuing genetic testing for the HD gene. We also hope to learn about any advice you’d wish to share with other adult child caregivers and also potentially with genetic counselors and 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 participate in the survey, click here.

 

How Do 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 how they might impact the individual’s decision of whether or not to pursue genetic testing. If you are or know of an at-risk individual currently considering genetic testing, you may be eligible to contribute to research by completing this survey. The survey should take no more than 45 minutes to complete, and participants may choose to be entered to win an amazon gift card. Click here to take the survey.

Predictive Testing and Clinical Trial Results

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.

Exploring knowledge, perceptions, and attitudes of Huntington’s disease family
caretakers towards palliative care and genetic counseling

A genetic counseling student at the University of California, San Francisco is working with a group of researchers to conduct a project exploring the experiences of family members who take care of people with Huntington’s Disease. They are interested in understanding how family members who take care of people with Huntington’s Disease (family caregivers) understand and feel about palliative care and genetic counseling. If you are a family caregiver or HD family member, you may be eligible to participate in this 15-25-minute-long survey. Volunteers will be entered into a raffle or a chance to win a $50 Amazon gift card. For more information, please contact Justin Peng (Justin.Peng@ucsf.edu), or visit the survey to learn more by clicking here

Experiences and Psychosocial Effects of Individuals Who Pursued Predictive Testing for Huntington Disease and Received Negative Results

A genetic counseling graduate student from Kean University is conducting research on the experiences and psychosocial effects of individuals who have received negative predictive testing results for HD.

A variety of adverse psychosocial effects have been associated with predictive testing for HD, regardless of test result. Therefore, follow-up counseling and support is recommended for all individuals who undergo predictive testing. However, the guidelines that outline this specific type of follow-up support are limited, especially for individuals who receive a negative predictive testing result. The purpose of this study is to explore the experiences of individuals who have received negative results. Investigating this topic will be beneficial to address the current knowledge gap and help identify how genetic counselors can better support these individuals during the post-test counseling process.

The study consists of participating in a Zoom interview with the researcher. The interview will last approximately 30 minutes to one hour.

If you have received a negative result in the past 10 years and are 18 years or older, you may be eligible to participate in this study.

To learn more about this study, click here to review the informed consent form.

If you are interested in participating, click here to sign up for an interview and make your voice heard.

Motivations for Genetic Testing

Clinical trial candidacy is a new incentive for predictive genetic testing. Researchers at the University of Pennsylvania are conducting a study to learn about what people consider when deciding whether or not to learn their genetic status, especially as it applies to potential clinical trial participation. The results of this study will inform clinical trial construction and the education and counseling needed for potential participants. Individuals 18 years and older who are able to read English are invited to participate. To participate in this survey you must be a blood relative of someone who has Huntington’s disease, but are not showing symptoms yourself. This means you can either have tested negative, tested positive but are pre-symptomatic,  be at-risk and considering genetic testing, or be at-risk for the disease and decided not to undergo genetic testing. To participate in the survey, click here 

Measuring the Daily Stressors of Young People Affected by Huntington’s Disease

Researchers at Monash University in Australia are conducting a study to understand how young people are affected by HD. If you are between ages 18-35 and have HD in your family, consider completing this online survey to make your voice heard!

This 30-minute assessment will ask for your thoughts on what aspects of your daily life are stressful or concerning, such as family, social relationships, and daily functioning. For more info check out the study flyer.

Developing Speech as a Biomarker for HD  

—Open to All Adult English Speakers—

Are you looking for an easy way to participate in Huntington’s Disease research?

Five minutes from YOU can help researchers from Linguistic Data Consortium at the University of Pennsylvania’s with a cutting-edge project to identify and treat HD and neurodegenerative disorders far earlier than current methods. You can impact research to track brain health over time by performing simple tasks here.

–  Our goal is to create a web app that uses language to track neural health and identify the early onset of neurodegenerative disease in the same way that smart watches and phone apps track physical health.

– Speech and brain health are tightly linked, thus we plan to develop software to detect subtle changes in speech patterns that signal the beginning of neurological disorders.

– We plan to detect verbal decline on an individual basis to flag the need for medical attention just as sudden weight loss would.

– Earlier detection will give therapies and medications that may not currently be effective a greater chance of better outcomes.

By adding a simple, brief audio sample to our data set, you join the fight against HD and other brain diseases.