Researchers, clinicians and other HD healthcare professionals frequently need to solicit input from the HD patients, families and caregivers about topics such as genetic testing, symptoms and clinical trial participation through anonymous surveys. 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 only provides information on Institutional Review Board (IRB) approved surveys. The surveys provide an opportunity for individuals to participate in the research process. If you have a question about any of the surveys listed here, please contact the study coordinators directly.
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. In order to be eligible to participate, you must…
Psychological well-being among those who are at risk from, or who have tested positive for Huntington’s Disease (HD)HD well-being
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…
Huntington 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….
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…