Help Us Learn More

 

Researchers, clinicians and other HD healthcare professionals frequently use anonymous surveys to solicit input from HD patients, families and caregivers about topics such as genetic testing, symptoms and clinical trial participation. The results of these surveys are used to help guide future HD care and research strategies. Here you will find information on surveys being performed by the HD research community that would benefit from your feedback.

HDSA works with researchers and students to review survey materials and Institutional Review Board (IRB) approvals and we only provide links to approved surveys. 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

myHD story: “Making HD Voices Heard”

The Huntington’s Study Group (HSG) recently launched myDstory, an online research platform developed with the goal of better understanding the experiences of people living with HD, determining clinical outcomes important to people affected by the disease, and gathering de-identified data of their experiences. HSG is now recruiting participants for a pilot study in the online platform, “Making HD voices heard.” This study will ask people 18 years and older with a diagnosis of HD to report on their experiences and day to day functioning with the disease. To learn more and see if you may be eligible to participate, visit the HSG website, view the study listing on HDTrialfinder.org, or email info@myhdstory.org.

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 

Burden of HD Survey – Seeking Perspectives of Pre-Symptomatic Individuals Living in the USA

Huntington’s Disease (HD) community members, Seth Rotberg and BJ Viau, are conducting a short (~10 minutes) research survey to gain a deeper understanding of the impact Huntington’s Disease has on people before they’ve been clinically diagnosed. If you’re 18+ years old, reside in the U.S.A, and are either at-risk or pre-symptomatic for HD, we encourage you to share your experience. The results will be completely anonymous and will help us show the risk pre-symptomatic patients are willing to take to participate in studies prior to showing symptoms. For more information or to take the survey, click here.

HD Caregiver Study

Are you a caregiver for someone with Huntington’s Disease? Researchers at the Michigan School of Psychology are conducting a study to identify the emotional factors in caregivers of loved ones with Huntington’s Disease (HD). Findings will help medical providers and counselors better understand the emotional impact of caring for someone with HD. If you are 18 or older, have provided care for someone with HD, speak and read English fluently and assist your loved one with at least one activity of daily living, you may be eligible to participate. To learn more, view the study flyer here, or to take the survey, click here. For more information, please contact Principal Investigator, Andrea Brent, MA, Doctoral candidate at Michigan School of Psychology; (989) 317-5007 or abrent@msp.edu.

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.

Assessing Thinking Patterns in HD

Researchers from the University of Virginia are trying to find out how certain thinking patterns affect mood and anxiety symptoms in HD. If you are 21 years or older and are diagnosed with HD, you may be eligible to participate in online surveys about your thinking patterns, mood, and anxiety symptoms.

The surveys can be completed using the internet on your computer, phone, or tablet, and they should take about 30 minutes to complete. Participants will be emailed another set of surveys to repeat after 2 weeks, and each participant can receive up to $50 in gift cards for participating in the study.

If you are interested in participating in this study, please contact the study team for a link to the survey. Please reach out to Soojung Ahn, MSN, RN, for more details at sa4ve@virginia.edu, (434) 234-7855.

Attitudes towards Huntington’s genetic testing – A research study

A team of researchers at the London Business School have created a study aimed at understanding people’s attitudes toward the difficult and complex decision of whether to test for Huntington’s disease. The purpose of this study is to understand people’s attitudes toward testing for HD and the psychological consequences of testing. The findings of this study could potentially help complement consulting procedure for people who have or are at risk of developing Huntington’s disease or have already developed Huntington’s disease. 

The research study is organized by Professor Simona Botti and PhD candidates Nazli Gurdamar Okutur and Selin Goksel at London Business School. The study consists of filling in a short online survey that takes approximately 10 minutes. 

 The researchers are looking for: 

  • People who have Huntington’s disease
  • People who have tested positive but are not yet showing symptoms
  • People who are at risk but haven’t tested 
  • People who have someone they care about who is affected by HD 

If you are 18 years of age or older and are interested in participating, please click on this link: https://lbs.eu.qualtrics.com/jfe/form/SV_0dJVCe5pqXfPgbA 

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.