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 Tamara Maiuri, PhD, Associate Director, Research and Patient Engagement at tmaiuri@hdsa.org . If you have a question about any of the surveys listed here, please contact the study coordinators directly.
Current Surveys
HD and Insurance Survey
Whether you are diagnosed with or at-risk for Huntington’s Disease, the decision to pursue life, long-term care, or disability insurance is a difficult one. Researchers at the Huntington’s Disease clinic at UTHealth Houston are looking to better understand the experiences of those pursuing these specified insurances, including motivating factors and barriers faced in obtaining these insurances.
This is survey is open to any English-speaking individuals, 18 years or older, who are diagnosed with or at-risk for HD, and who are currently residing in the U.S. If you are interested in participating, check out the flyer here, or click here to access the anonymous survey. If you have any questions or concerns, please contact karli.livingston@uth.tmc.edu.
PaSAGE Study: Patient Centered Approaches to Gene Editing Research
The Patient Supported Approaches to Gene Editing (PaSAGE) Study is an NIH-funded study about views, ethical concerns, and clinical aspirations on prenatal gene editing technologies. This is a group of social scientists and bioethicists studying the possible impact on families and communities of genetic therapies that might become available in the future. They are interested in connecting with people from HD families in the USA who have lived experience with HD, whether as a patient, caregiver or loved one.
Participation in this interview study involves a one-hour phone call with someone from the research team at the Mayo clinic. If you have a family history of HD, they would like to know your thoughts. No matter how you feel about potential treatments, they are interested in hearing from you. If you would like to take part in this interview study, please email pasagestudy@mayo.edu. You may also refer to the study flyer here.
Food Intake and Fasting Behaviors in Huntington’s Disease Patient Population
Are you at-risk for or living with Huntington’s disease (HD)? Researchers and physicians at Oregon Health and Science University invite you to participate in a brief online survey study designed to better understand dietary habits in the HD community. More specifically, the purpose of our survey is to receive feedback regarding the daily timing of food intake and prevalence of fasting behaviors in persons with HD or at-risk for HD. This survey will only take 3-5 minutes to complete and is entirely anonymous – you will not need to give your name or any personal information. Participation in this study will provide much needed information for future studies that will examine the effects of various dietary habits on HD progression and health-related outcomes. If you are interested in participating, please click the weblink below or copy and paste the weblink into your browser. If you have any questions about this study, please contact wellsru@ohsu.edu. We thank you in advance for your time!
Link: https://ohsu.ca1.qualtrics.com/jfe/form/SV_8IcXqELmagpnejI
Attitudes towards Huntington’s Disease Genetic Testing- A research study
Deciding whether or not to go through genetic testing for Huntington’s disease is a difficult decision. That’s why a team of researchers (Professor Simona Botti at the London Business School, Dr. Selin Goksel at Vrije Universiteit Amsterdam, and Dr. Nazli Gurdamar-Okutur at Koc University) has created a research study which aims to understand the psychological consequences of testing for Huntington’s disease.
The study consists of filling in a short online survey that takes approximately 5 minutes. The researchers are looking for individuals who have already started developing symptoms of Huntington’s Disease. The survey includes several questions assessing participants’ current psychological well-being. The researchers will donate $2 to HDSA for each participant who fills out the survey completely.
If you are interested, please click on the following link to take the survey! Your effort is very much appreciated.
https://vueconomics.eu.qualtrics.com/jfe/form/SV_diiBo6e7uOfcMu2
The Huntington’s patient experience: We’re looking to interview people with HD who have received psychological therapy
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 with Huntington’s (i.e. 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 insights to better understand what is and isn’t helpful in psychological therapy practice.
If you have had experience with psychological therapy, are over the age of 18, have access to a computer and can speak and understand the English language, please get in touch–you may be surprised by what you have to offer! Please contact the researcher to arrange a convenient time to talk at g.r.adams@reading.ac.uk.
An AI-based Algorithm to Analyze Handwriting Patterns for Early Detection of Movement Disorders
Are you or a loved one living with Huntington’s disease? We invite you to participate in our innovative research project! Our study aims to enhance the early detection and monitoring of movement disorders through AI-powered handwriting analysis. The researchers will send the handwriting assessment materials, including detailed instructions, the results sheet and a prepaid return envelope to potential participants. Participants can complete the assessments at their convenience and return them to us via the prepaid envelope. Your participation can make a meaningful impact on the development of more precise diagnostic tools for movement disorders. If you’re interested in taking part in this study or have any questions, please feel free to email us at m-9389033@moe-dl.edu.my.
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
HDYO Survey Series
HDYO strives to support, educate and empower young people (18-35) impacted by Huntington’s disease. To accomplish this goal, they have launched a series of surveys to better understand different aspects of the community’s lives as they continue their journey with HD. Visit https://en.hdyo.org/a/752-hdyo-survey-series to learn more.
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 stockmae@mail.gvsu.edu or Dr. Sri Nandamudi at voice.swallow@gvsu.edu.
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.
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.
