HDSA Surveys & Support the HD Parity Act!

Participate in HDSA-Vetted Research Surveys 

Researchers, clinicians, healthcare professionals, and students studying HD frequently design surveys to get input from the HD community on different topics relevant to HD families. HDSA works with them to review survey materials and ethics approvals, and we post studies that meet our criteria on our website. Right now, there are several new surveys, including ones directed at youth, those from HD families who have tested negative, presymptomatic individuals, partners/caregivers, those who are at-risk, or have developed symptoms of HD. So – there’s an opportunity for everyone in the community to advance HD research from home. Please check out our survey listings and make your voice heard! Below we are highlighting two of the most recent additions to the page.   

What motivates someone to seek predictive genetic testing?  

Researchers at the University of British Columbia invite you to participate in an online survey that aims to estimate the demand for predictive testing among the HD community and how this might be affected by future clinical trial results. The goal of the survey is to help our healthcare system, healthcare providers, clinicians, genetic counselors, and others involved better prepare for a potential surge in predictive testing demand and to in turn improve the quality of care given to patients and families affected by HD. The survey is open to individuals 18 or older who are already affected by HD, individuals at risk for developing HD, and individuals related to someone affected by HD (spouse/partner or family member). To learn more and take the survey, click here. 

How might support partners influence the predictive genetic testing process?  

Genetic counseling for at-risk individuals exploring the option of testing for Huntington’s Disease often encourages the presence of a support person. However, there is little information on how the support person, particularly when they are a romantic partner, impacts the at-risk individual. Researchers at Stanford University are conducting an online research study that aims to determine what factors may contribute to a romantic support person having a positive or negative psychological effect on the at-risk individual, and how they might impact the individual’s decision of whether or not to pursue genetic testing. If you are or know of an at-risk individual currently considering genetic testing, you may be eligible to contribute to research by completing this survey. The survey should take no more than 45 minutes to complete, and participants may choose to be entered to win an amazon gift card. Click here to take the survey. 

Do you think two years is too long? Help Pass the HD Parity Act!  

Did you know that after an individual with HD qualifies for SSDI benefits, they have to wait an additional two years to access Medicare? For families affected by HD, two years can mean dramatic changes in their medical situations and ability to manage them without the help of trained medical professionals. The HD Parity Act is a critical piece of legislation that will waive the current two-year wait period for individuals with HD on SSDI to access Medicare benefits, and would waive the additional 5-month waiting period for people with HD to access SSDI benefits. HDSA needs your help to pass it! To learn more about how you can push your local legislators to speak up for HD families and help pass the HD Parity Act, visit HDSA’s action center.