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.
Disclosure and Future Decision-Making in Romantic Relationships
Has Huntington’s disease affected the way you approach dating, relationships, and/or family planning? This study is exploring the process of disclosing a diagnosis or family history to a romantic partner and which factors couples consider for reproductive decisions. The information gathered from this study can give healthcare professionals, such as genetic counselors, deeper insight into this important aspect of life for the Huntington’s disease community. Please visit this link to participate in a short confidential survey: https://is.gd/HDsurvey
To be eligible for this survey you must be at least 18 years old and:
- At risk for Huntington’s disease OR
- Diagnosed with Huntington’s disease OR
- The romantic partner of someone who is at risk for Huntington’s disease OR
- The romantic partner of someone with Huntington’s disease
Please feel free to contact me with any questions or concerns!
Phone: (714) 456-5837
Fax: (714) 456-5330
Apathy in HD Study
Researchers from Monash University in Australia are seeking people with the HD gene as well as their partners or carers to complete a short, 15-minute online survey about their health, mood and activities to help us better understand how apathy (a loss of motivation) occurs across the lifespan of people with the Huntingtin gene.
This is important as apathy negatively affects people’s engagement with their friends, families and everyday activities. These effects are often also felt by family members, so we are also seeking responses from partners and carers of a person with HD. If you would be interested in participating in this research, the links to the consent form and surveys can be found below.
If you are HD gene positive, please complete the HD Participant Questionnaire.
If you are a partner or caregiver, please complete the HD Partner Questionnaire.
You may contact doctoral student Kelly Atkins, Kelly.firstname.lastname@example.org,with questions about this research.
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