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.
FOCUS Online: Help develop a tool to assess progression of HD symptoms
CHDI Foundation, Inc., invites you to participate in an online research study designed to evaluate the Functional Rating Scale 2.0 (FuRST 2.0). The FuRST 2.0 is a new measure that is being developed to improve the assessment of Huntington’s disease’s (HD) impact on people’s functional abilities. Any person who is 18 years of age or older and self-identifies as having HD (e.g., gene positive pre- or post-clinical motor diagnosis) is invited to participate. The study involves responding to the FuRST 2.0 and two other short questionnaires. The study will take approximately 20 minutes to complete. No compensation is provided for participation. If you are interested in participating, please click on the weblink below or copy and paste the weblink into your browser. If you have any questions about this study, please contact FOCUSOnlineStudy@chdifoundation.org.
Questionnaire Hyperlink: https://forms.office.com/r/eXfRT1ZanZ
Impact of Huntington’s Disease on Communication and Swallowing Abilities
If you are an individual diagnosed with Huntington’s disease, or a primary caretaker, residing in the USA, please consider taking 15 minutes to complete a student-led research project on “Impact of Huntington’s Disease (HD) on Communication and Swallowing Abilities.”
A team at Grand Valley State University (Michigan) is investigating the speech, language, swallowing, and quality of life changes in individuals in early stages of Huntington’s disease (HD). They also intend to bring community awareness to communication and swallowing difficulties associated with HD, and provide preventative care as a part of graduate speech-language pathology program education.
If you are interested in participating, please click here to access the anonymous survey.
If you have any questions, please contact Emily at firstname.lastname@example.org or Dr. Sri Nandamudi at email@example.com.
Survey on Digital Data Collection
Regeneron Pharmaceuticals is conducting a survey about the use of digital data collection technology during clinical trials, such as on a home computer, device, or phone. Their goal is to incorporate input from people with HD and other diseases to understand their comfort level with this type of data collection, and improve participants’ experience during clinical trials. This survey is open to people with HD, their partners, and those who care for them. Please click here to participate. You will be taken to a consent form which will lead to the survey.
Motivators and Deterrents of Clinical Trial Participation for Rare Disease Patients
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 this project will be used to educate pharmaceutical companies about what factors are most important to consider when recruiting for a clinical trial. Participants must be a person or the spouse of person diagnosed with a rare condition, residing in the United States or another English-speaking country, willing to complete an up-to-15-minute online survey between now and March 3rd, 2023. To participate, go to this link to access the informed consent and to begin the survey. If you are unable to access the link above, please copy and paste this URL into your browser: https://www.engagehealth.com/survey/TakeSurvey.aspx?PageNumber=1&SurveyID=n4KInn30&Preview=true#
How does eating and swallowing affect quality of life in HD?
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 (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 (firstname.lastname@example.org) for more information.
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 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 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.
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.
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.