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.
Assessing Thinking Patterns in Huntington’s Disease
Researchers from the University of Virginia are trying to find out how certain thinking patterns affect mood and anxiety symptoms in Huntington’s disease. We are recruiting people diagnosed with HD to complete online surveys about their 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. We will email participants 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.
At this time, we are including participants who have been diagnosed with HD, are 21 years or older, and who have never been diagnosed with dementia.
If you are interested in participating in this study, please click the following link. The link will first take you to an informed consent document that will tell you more details about the study. Please review this informed consent document and reach out to me if you have any questions or comments about the study. Once you feel comfortable with participating in the trial, please complete and sign that informed consent document electronically. You will then be taken to a screen to begin the survey study.
Please reach out to Jessie Gibson, PhD, RN, AGPCNP-BC, via phone or email with any questions at firstname.lastname@example.org or 434-924-0107
Compensated Interview Study for People Taking Deutetrabenazine (Austedo)
You’re invited to share your experience with Huntington’s Disease (HD).
M3 Global Research is looking to speak with individuals living in the USA who have been diagnosed with Huntington’s Disease (HD) and have taken deutetrabenazine (Austedo) in the past 12 weeks.
Your participation would entail taking part in a 75-minute web-assisted telephone interview. To thank you for your time, you will receive $125.
If you are interested in participating, please copy complete this online survey to help determine if the study is a good fit for your experiences. If you are selected to participate, the M3 team will contact you with further instructions.
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.
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: http://lbs.eu.qualtrics.com/jfe/form/SV_9zqupfDREDm2D1H
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.
Decisions about Genetic Testing for HD
—Open to Those at Risk for HD and Their Loved Ones—
You are invited to participate in a research study conducted by researchers at the University of Pennsylvania and Isaac Elysee, Master’s student in the University of Pennsylvania Genetic Counseling Program.
The goal of this study is to compare how individuals at risk for HD and their close companions and loved ones think about predictive genetic testing for HD and weigh the decision. This study may help genetic counselors and other clinicians better attend to the needs of HD patients and families in the future.
This study is open to anyone who is at least 18 years old and fits at least one of the following criteria:
- You have personally considered having genetic testing for HD OR
- You are currently considering having genetic testing for HD OR
- You have a close relationship with someone who has considered or is currently considering genetic testing for HD.
The study consists of a short online survey and an optional, short audio-only interview over Zoom. Those who complete the Zoom interview will be eligible to win a $25 Amazon e-gift card.
To take the survey or for more information about the study, please click on this link: https://redcap.med.upenn.edu/surveys/?s=W4AD8RTNXK. You may also copy and paste the link to your URL.
Thank you for contributing to Huntington’s Disease research.
Caregiving Across the Lifespan
A researcher at Towson University is conducting a study on Caregivers Across the Lifespan that includes self-assessment of caregiver experiences, personal characteristics, mental and physical health. The study takes 30 minutes to complete and can be done through an online survey.
To be eligible to participate in this study, you must be 60 years old or older, able to complete the questionnaires yourself, and have provided care for a relative for at least one month.
There is no monetary compensation for participating in this study. This study has received IRB approval.
If you believe you are eligible and are interested in participating, please click on this link: https://towson.az1.qualtrics.com/jfe/form/SV_cA3cJPIMiFBymfH