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 at Lfox@hdsa.org. If you have a question about any of the surveys listed here, please contact the study coordinators directly.

Current Surveys

Survey for HD Patients & Caregivers

Please take a few minutes to participate in a new survey for HD patients & caregivers to help understand their experiences with HD and reactions to potential future changes in the treatment of HD. The survey is being run by the Schlesinger Group, and if you qualify to participate in the full survey, compensation is available. LEARN MORE

Effect of optimism, illness perceptions and disease stage on quality of life in individuals with Huntington’s disease

Hello, my name is Neli Dragneva and I am a third-year psychology student at Liverpool Hope University. This study is for my dissertation which is investigating the effects of optimism, disease duration and illness perceptions (beliefs) on quality of life in adults affected by Huntington’s disease. LEARN MORE

Psychological Well-Being Among Those Who Are at Risk From, or Who Have Tested Positive for Huntington’s Disease

Researchers from the University of Leicester in the UK, alongside HD clinicians, are trying to find out about psychological well-being among those who have tested positive for HD (whether symptomatic or not), and those at-risk of HD. The aim of this research is to help understand how people living with HD might best be supported… LEARN MORE

Huntington’s Disease Survey

We invite you to participate in a research study conducted by investigators at The University of Pennsylvania. The purpose of this study is to evaluate the knowledge and perception of individuals towards gene therapy for Huntington’s Disease (HD).This survey is meant to obtain information about an individual’s beliefs and attitudes towards gene therapy for HD… LEARN MORE

Juvenile HD Survey

Investigators at the University of Iowa are conducting a study about symptoms of Juvenile Huntington’s Disease (JHD) that may occur frequently, but are poorly recognized by health care professionals. We are inviting adults who have been the primary caretaker for someone who has been diagnosed with JHD to complete an online survey to describe… LEARN MORE